Post Orgasmic Illness Syndrome (POIS)

  • 20068 Replies
  • 6523066 Views

0 Members and 3 Guests are viewing this topic.

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3050 on: 23/01/2009 02:59:37 »
Blood Test Results:

An endocrine test revealed my blood work results:

Testosterone - Normal
Prolactin - Normal
TSH - Moderately high 5.9

I showed her the POIS study and asked her for other possible ideas what is causing POIS.  She only recommended me to another doctor, "you've exhusted endocrine, check with a urologist."


What nonsense! Limejuice, her reaction didn't feel right to me. At all! She didn't have a recommended "next step" for high TSH??

I had no luck with several top urologists in a major city. I would try another endocrinologist and ask for more extensive tests. Email them Waldinger's paper, then ask "Think you can help?" Go with the endo with the most positive and logical answer. I know it's work, but worth it. Or ask a physician you trust to recommend one. My Harvard biophysics friend recommends that we try local university medical group endo's.

Low Testosterone (my previous urologists only looked at a crude measure of testosterone and said I was ok!) + Very High prolactin were MAJOR findings for me.

I'm now on testosterone patches and feel much better mood-wise (which 2 other physicians confirmed can be expected) just as a side benefit! I will soon re-test all of this PLUS CORTISOL:

MY ENDOCRINOLOGIST'S LABWORK ORDERED FOR POIS

Counterpoints asked which blood tests were ordered after my POIS evaluation appointment, so they are listed below. I just now got the list, and was dismayed that CORTISOL was not listed. So I asked the endocrinologist if it could yet be included with today's creatinine blood test (kidney function). Creatinine test is required for pre-MRI injection so MRI results can be shown "with and without contrast".

Out of reference range
-PROLACTIN

Extremely high (reason for MRI of the pituitary gland this week)

-TESTOSTERONE(Bioavailable Testosterone, Free Testosterone, Total Testosterone, Sex Hormone Globulin Binding)

"Free T" is low; others I don't have reference range on summary.

In reference range
-DHEA-SULFATE

-FSH (Follicle Stimulating Hormone)

-LH (Luteinizing Hormone)

-TSH (Thyroid-Stimulating Hormone)

Well, let's see where this goes. I'm happy that this doctor is taking POIS seriously. This is what he decided after listening to my discussion about this forum, seeing Dr Waldinger's paper, and asking detailed questions about my medical history.

I didn't want to push specific testing requests any further than this. I'm not the doctor.
« Last Edit: 23/01/2009 03:16:26 by demografx »

*

Offline Counterpoints

  • Hero Member
  • *****
  • 592
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3051 on: 23/01/2009 05:03:32 »
Limejuice,
You should look for an endocrinologist who has a hospital affiliation, or is known to do some research and reading.  A lot of endos (and physicians for that matter) are closed minded, and aren't intellectuals -- if something isn't very basic, they pass it on to someone else. But there are exceptions, and if you ask around, you will find the right person.  When you are introducing the problem to an endocrinologist, it would be worth mentioning that you have corresponded with someone who has almost an identical problem, and who was helped by an endocrinologist.

I have found an endocrinologist who focuses on adrenal problems, and is an academic.  Hopefully I will have some luck!  And I wish you luck in your search.

*

Offline Limejuice

  • Sr. Member
  • ****
  • 313
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3052 on: 23/01/2009 06:25:16 »
Thanks for the concern and recommendation girlwind, demo, counterpoints, and others.  The endo did prescribe 50mgs of synthroid to treat the thyriod BUT as y'all know it's not the thyriod that really bothers me.

Time to look around.

*

Offline girlwind

  • Sr. Member
  • ****
  • 346
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3053 on: 23/01/2009 15:34:34 »
Limejuice--I would not underestimate the effect that low thyroid can have on POIS symptoms. I have definitely seen
improvement in both my POIS and CFS since I began addressing my hypothyroidism. Also, you should know there is
A LOT of controversy among both thyroid patients and expert thyroid doctors regarding the Synthroid medication--
which is a synthetic T4 ONLY thyroid remedy. Many patients have found they do better with Armour thyroid, which is
a natural thyroid remedy that's been around for a hundred years (made from pig thyroid), as it contains BOTH T4 and
T3. It all depends on where your thyroid deficiency lies. That's why it would be a good idea to have more extensive
blood tests done:  the Free T3, Free T4 and TPO (for thyroid antibodies), and Reverse T3. You'll get a much
more complete picture with a combo of all those tests.


PS  I've beeen trying to add some articles for you, but each time I do, what I've previously written prior gets erased. So
I just have these two for now. You might also check out Mary Shomon's website--she is the author of one of the best
books that I've read on thyroid--Living Well With Hypothyroidism.

http://www.thyroid-info.com/articles/mercola.htm
http://www.thyroid-info.com/articles/brownstein-hormones.htm

*

Offline msl

  • Jr. Member
  • **
  • 18
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3054 on: 23/01/2009 16:01:17 »
Hi guys, its been a while. For some reason I don't know where to place POIS anymore :S I have seen numerous doctors, an erectile dysfunction doctor and have been taking prozac for 1 or 2 years now to reduce the frequency of nocturnal emissions. After the erectile dysfunction consultant was unable to help, he referred me to a neurologist and a sexual psychotherapist.. yet the appointment letter has been lying on my desk for weeks now :/ months ago I would have lept at the oppertunity, but now I can't shake the thought "is this all in my head?" What do you guys think?

*

Offline underwater

  • Sr. Member
  • ****
  • 158
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3055 on: 23/01/2009 17:45:18 »
Hi guys, its been a while. For some reason I don't know where to place POIS anymore :S I have seen numerous doctors, an erectile dysfunction doctor and have been taking prozac for 1 or 2 years now to reduce the frequency of nocturnal emissions. After the erectile dysfunction consultant was unable to help, he referred me to a neurologist and a sexual psychotherapist.. yet the appointment letter has been lying on my desk for weeks now :/ months ago I would have lept at the oppertunity, but now I can't shake the thought "is this all in my head?" What do you guys think?

I don't think it's all in your head. There are real symptoms responding to the trigger of orgasm. Everybody is different, so just like any disorder, each person has a unique set of responses. Some people may find they have a similar cluster of symptoms, others more random. It seems like this disorder is rare, and since it involves sex and orgasm, its not the most comfortable subject. There is no way we can avoid at least considering psychological conditions, because these may play a part. But as far as I can see, even if there are psychological components to POIS, there are real, biochemical and nervous system events taking place after orgasm. POIS must take place (logically) in the context of our whole, unique physiology, yet it clearly has a direct connection to sex, orgasm and "recovery" and, ipso facto, our mind too! Who in this forum can take their mind off of "sex/orgasm"? I bet that most sufferers here are "by nature" very sexual beings. We don't really discuss this much, but if it's true, it has to play at least some part in this condition.
 

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3056 on: 23/01/2009 19:58:39 »

I have found an endocrinologist who focuses on adrenal problems, and is an academic.  Hopefully I will have some luck!


Counterpoints, sounds promising. Good luck!

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3057 on: 23/01/2009 20:04:25 »

I can't shake the thought "is [POIS] all in my head?" What do you guys think?


Rapidgaming, good news! Reuniting posted the following New York Times (credible publication!) article by a NYC PSYCHIATRIST who says "it's NOT all in your head"!

"Sex and Depression: In the Brain, if Not the Mind"

http://www.nytimes.com/2009/01/20/health/views/20mind.html

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3058 on: 23/01/2009 20:11:50 »
Hi guys, its been a while. For some reason I don't know where to place POIS anymore :S I have seen numerous doctors, an erectile dysfunction doctor and have been taking prozac for 1 or 2 years now to reduce the frequency of nocturnal emissions. After the erectile dysfunction consultant was unable to help, he referred me to a neurologist and a sexual psychotherapist.. yet the appointment letter has been lying on my desk for weeks now :/ months ago I would have lept at the oppertunity, but now I can't shake the thought "is this all in my head?" What do you guys think?

Rapidgaming, Some of us are now leaning towards seeing an endocrinologist. Girlwind, Counterpoints, myself, maybe more.

The co-author of Dr Waldinger's original POIS study is an endocrinologist, so that helps establish credibility when you see him/her. If you don't have it already give Pyropeach your regular email address and ask for the PDF!
« Last Edit: 23/01/2009 21:12:38 by demografx »

*

Offline Counterpoints

  • Hero Member
  • *****
  • 592
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3059 on: 23/01/2009 20:15:14 »
rapidgaming: I would see the neurologist you were referred to.  Mention that someone with this problem was found to have adrenalcortical carcinoma, and that another was found to have an empty sellum.  Say that those who have seen physicians who took the condition seriously, and followed up, have identified problems associated with the condition. (e.g. an empty sellum can affect cortisol and prolactin levels).  The neurologist would be able to advise you.  I would also look for an endocrinologist.

It also wouldn't hurt to hear the sexual psychotherapist out. He or she might have some really good advice.
« Last Edit: 23/01/2009 20:35:50 by Counterpoints »

*

Offline underwater

  • Sr. Member
  • ****
  • 158
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3060 on: 23/01/2009 21:01:18 »
Counterpoints--
Good luck with your new physician's focus on the adrenal glands. It is great that he is an academic (not stuck in any particular mind set). Perhaps if we can find any "early (broken?) triggers", they may reside here.  My POIS symptoms - with particular focus on "recovery time frame" - expanded from 1-2 days in late 80s, 2-3 in mid 90's to what it is now. For me (and I may be totally wrong), the extent of nervous system (adrenal?) debilitation seems to be connected to my POIS episode. The years of suffering must have taken their collective toll. Could this accumulated "stress" have contributed to this time frame expansion? What is baffling is that some of us appear to have symptoms that are on the opposite ends of the spectrum, if there is a spectrum. Some are just totally wiped out and seriously, cognitively impaired. I'm a bit amped up and depressed, and more irritable than cognitively impaired. What is the history of your "recovery time frame"? Or is this even relevant in your case?

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3061 on: 23/01/2009 21:16:06 »
There is hope!

My endocrinologist liked the article from The New York Times! [;D]

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3062 on: 23/01/2009 21:27:26 »
Forum tech disruptions

Everyone is frustrated, I've written complaints. AGAIN!

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

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3063 on: 23/01/2009 21:40:40 »

It also wouldn't hurt to hear the sexual psychotherapist out. He or she might have some really good advice.


I agree. A sexual psychotherapist whom I contacted in 2002 didn't have an answer for POIS but 1) connected me to Dr. Waldinger and his paper when it came out. A major breakthrough for me: I now had a malady with a name that I could search that eventually led me to this forum, and 2) referred me to another sexual psychotherapist in Czechoslovakia who strongly believed in a POIS-testosterone connection, which I tested and continue to learn more about and in fact is my current big hope for some relief, which I have already seen in the form of positive mood change and 3) was able to assist Counterpoints in a small way with a potential forum researcher. So yes, they can help!

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3064 on: 23/01/2009 21:56:35 »
B_Jim? Counterpoints? Others?

Lately, I've been wondering (don't ask me why though):

Is our mission as difficult as finding a cure for the common cold?

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3065 on: 23/01/2009 21:58:38 »
   
We cross the 200 pois cases limit. Intersting dark circles eyes symptom . I will look this tommorow.

Terrific!

Counterpoints wrote recently that there are about 100 "unique" POIS cases. Why do we have so much duplication?

*

Offline girlwind

  • Sr. Member
  • ****
  • 346
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3066 on: 23/01/2009 22:39:43 »
For me (and I may be totally wrong), the extent of nervous system (adrenal?) debilitation seems to be connected to my POIS episode. The years
of suffering must have taken their collective toll. Could this accumulated "stress" have contributed to this time frame expansion? What is baffling
is that some of us appear to have symptoms that are on the opposite ends of the spectrum, if there is a spectrum. Some are just totally wiped out
and seriously, cognitively impaired.  I'm a bit amped up and depressed, and more irritable than cognitively impaired.

Underwater--In my case, I feel both amped up and exhausted at the same time. In fact, the more tired I am, the more restless I will
feel. This is noticable with both my worst POIS episodes and with my worst CFS days. It feels like driving with one foot on the gas and
one on the brakes, and getting nowhere. And yes, I think the ongoing stress (for me of chronic ill health) had a huge impact on both
my adrenals, and my nervous system, and my thyroid as well. In addition, I think it programmed me to feel this was "normal"--to be
so out of whack (buzzed up and exhausted at the same time). THis is why I deliberately stick to good "adrenal habits:" regular meals
and regular sleep--with an early bed time, and... hardest of all NO overdoing or compulsive activity. It can be very challenging, but
whenever I push myself, I pay for it. So I am learning how to be MODERATE. I think that was one of the inscriptions at Delphi, in addi-
tion to "Know Thyself"---"Nothing In Excess." A hard thing for modern westerners to embrace.
« Last Edit: 23/01/2009 22:50:13 by girlwind »

*

Offline Counterpoints

  • Hero Member
  • *****
  • 592
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3067 on: 23/01/2009 22:44:43 »
   
We cross the 200 pois cases limit. Intersting dark circles eyes symptom . I will look this tommorow.

Terrific!

Counterpoints wrote recently that there are about 100 "unique" POIS cases. Why do we have so much duplication?

I said about 100 cases for this specific forum.  I based that off of this: http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

I think B_Jim is including other cases of POIS found on the internet, in the 200 figure.  This accounts for the discrepancy.

*

Offline underwater

  • Sr. Member
  • ****
  • 158
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3068 on: 23/01/2009 22:48:18 »
There is hope!

My endocrinologist liked the article from The New York Times! [;D]

Demo---
For me, I always have SSRI therapy in my back pocket as a last resort. This was my last suggestion to my psychiatrist six weeks ago. But I will avoid it at all costs. Recovery time frame (of POIS) is very important in my opinion. Preventing reuptake of Serotonin may help in fast recovery cases mentioned in the article. I'm not sure in protracted ones (2-4 days). I am much more cautious than the doctor when he states, "I would exploit the usually undesirable side effects of the SSRI for possible therapeutic effects."
It would be great if SSRI's helped anyone, I would jump for joy. But I would also be very saddened if, after weeks of waiting for "steady state", it caused added misery.
Having read hundreds of posts, I seem to recall that many contributors have tried SSRI's in the past (including me). But as I read them, many seem (including me) to have other conditions too. But yet as I write this, I'm not sure. POIS could be a multi-headed monster,the actual cause of other problems. Here's something I haven't stated: If I cure my GAD, I'm sure my POIS would diminish, no doubt. If I cured POIS, I'm sure my GAD would disappear. Yet I'm terrified to try an SSRI (again), for side effects scare the hell out of me.[I took Zoloft in 95', but it seemed to do nothing because I was taking it with a potent benzo,and I stopped the SSRI] But as I told my psychiatrist, it is a last resort, and I mean last. However I would feel like a complete moron if I try it down the road and it works! Maybe my GAD, OCD (obsessive compulsive disorder) and my POIS is just one, connected condition arising out of the physical fluke of orgasm, unrecognized and inconsequential as a teenager, but manifesting itself and growing to a disturbing disability during the course of a lifetime. Thanks for suggesting the article. I'll think good and hard about my SSRI option. What a  problem! But we will be happy when it is weakened and ultimately rendered harmless. But SSRI's are powerful and require careful, medical management.

*

Offline Counterpoints

  • Hero Member
  • *****
  • 592
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3069 on: 23/01/2009 22:50:10 »
B_Jim? Counterpoints? Others?

Lately, I've been wondering (don't ask me why though):

Is our mission as difficult as finding a cure for the common cold?

Our mission may be more analogous to preventing a cold, rather than curing it.  Some abnormal process is triggered by orgasm.  Hopefully we can alter this process in some way so that we feel better.  It's hard for me to speculate though, without more data and studies.  Interesting analogy.
« Last Edit: 23/01/2009 23:02:55 by Counterpoints »

*

Offline Counterpoints

  • Hero Member
  • *****
  • 592
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3070 on: 23/01/2009 22:52:48 »
Thanks for the good wishes with the endocrinologist. 

*

Offline underwater

  • Sr. Member
  • ****
  • 158
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3071 on: 23/01/2009 23:29:41 »
Girlwind---
Thanks for your response--
I'm a bit frustrated as I wrote a question and a post to you that took over 20 minutes in its composition, and then it disappeared---------------------------
Oh Well-----------I generally operate by flow of consciousness, and I'll never be able to retrieve it, because I am not concrete sequential, I'm right hemisphere chaos.
You mentioned Delphi; I sailed on a boat called the Delphi in 1973 in the Gulf of California. It almost capsized! I survived, but I still don't know myself. However I remember an orgasm then and I was POIS free.

*

Offline Counterpoints

  • Hero Member
  • *****
  • 592
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3072 on: 23/01/2009 23:43:52 »
Could this accumulated "stress" have contributed to this time frame expansion? What is baffling is that some of us appear to have symptoms that are on the opposite ends of the spectrum, if there is a spectrum. Some are just totally wiped out and seriously, cognitively impaired. I'm a bit amped up and depressed, and more irritable than cognitively impaired. What is the history of your "recovery time frame"? Or is this even relevant in your case?

Thanks underwater.   It's hard for me to judge whether, on the whole, recovery time has gotten better or worse.  I've changed my habits so much over the years, and the severity of my symptoms have also changed very much in this time.  I could first orgasm at 13.5, and I first connected the symptoms to orgasm at about 14.5.  (I believe symptoms started at about 14).  When I made the connection, I immediately stopped masturbating.  For the next year, my symptoms followed a pattern.  NE.  1 day later I would feel normal again.  2 days later I would have another NE.

This cycle broke, and changed many times.  At my worst, the symptoms have taken a week to get better. (About 3 years ago).  At best, symptoms were mild, and gone within minutes, 90% of the time (about 1 year ago). 

As far as exhaustion, etc.  This changes somewhat, too. Usually there is brainfog.  If I have waited a long time between orgasms, heart palpitations, feeling really on edge, and energized (but in a really bad way) are usually prominent symptoms.  If I am having orgasm once/day, and I repeat this process for weeks, these symptoms are usually less prominent -- in fact, I am more likely to feel exhausted (so the opposite end of a spectrum).

It feels like my condition has oscillated between two extreme ends of a spectrum, and along the way, it has paused somewhere in the middle.  One thing I can say for sure though, is that recovery time (with me) is dependent on frequency of orgasm.  If I average 1 orgasm/week, it takes longer to recover after each orgasm, than if I average 1 orgasm/day. 
« Last Edit: 23/01/2009 23:50:02 by Counterpoints »

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3073 on: 24/01/2009 00:21:20 »

I said about 100 cases for this specific forum.  I based that off of this: http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

I think B_Jim is including other cases of POIS found on the internet, in the 200 figure.  This accounts for the discrepancy.


Thanks for the clarification!

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3074 on: 24/01/2009 00:29:42 »
There is hope!

My endocrinologist liked the article from The New York Times! [;D]

Demo---
For me, I always have SSRI therapy in my back pocket as a last resort. This was my last suggestion to my psychiatrist six weeks ago. But I will avoid it at all costs. Recovery time frame (of POIS) is very important in my opinion. Preventing reuptake of Serotonin may help in fast recovery cases mentioned in the article. I'm not sure in protracted ones (2-4 days). I am much more cautious than the doctor when he states, "I would exploit the usually undesirable side effects of the SSRI for possible therapeutic effects."
It would be great if SSRI's helped anyone, I would jump for joy. But I would also be very saddened if, after weeks of waiting for "steady state", it caused added misery.
Having read hundreds of posts, I seem to recall that many contributors have tried SSRI's in the past (including me). But as I read them, many seem (including me) to have other conditions too. But yet as I write this, I'm not sure. POIS could be a multi-headed monster,the actual cause of other problems. Here's something I haven't stated: If I cure my GAD, I'm sure my POIS would diminish, no doubt. If I cured POIS, I'm sure my GAD would disappear. Yet I'm terrified to try an SSRI (again), for side effects scare the hell out of me.[I took Zoloft in 95', but it seemed to do nothing because I was taking it with a potent benzo,and I stopped the SSRI] But as I told my psychiatrist, it is a last resort, and I mean last. However I would feel like a complete moron if I try it down the road and it works! Maybe my GAD, OCD (obsessive compulsive disorder) and my POIS is just one, connected condition arising out of the physical fluke of orgasm, unrecognized and inconsequential as a teenager, but manifesting itself and growing to a disturbing disability during the course of a lifetime. Thanks for suggesting the article. I'll think good and hard about my SSRI option. What a  problem! But we will be happy when it is weakened and ultimately rendered harmless. But SSRI's are powerful and require careful, medical management.


Underwater, thanks for highlighting the SSRI angle. I missed it. I was simply too overjoyed from seeing a _psychiatrist_ say that post-orgasmic problems are NOT all in the head. Too many of us have been shipped off to the shrink for POIS.

I have 20 years experience with a number of SSRI's and have personally seen little effect, EXCEPT for the very first year of Prozac in 1989. That was for depression. I saw no effect at all on my POIS.

*

Offline underwater

  • Sr. Member
  • ****
  • 158
    • View Profile
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

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
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

  • First timers
  • *
  • 1
    • View Profile
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

  • Sr. Member
  • ****
  • 346
    • View Profile
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

  • Hero Member
  • *****
  • 727
    • View Profile
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

  • Jr. Member
  • **
  • 18
    • View Profile
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

  • Sr. Member
  • ****
  • 158
    • View Profile
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

  • Hero Member
  • *****
  • 727
    • View Profile
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

  • Sr. Member
  • ****
  • 189
    • View Profile
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

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
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

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
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!
http://www.youtube.com/watch?v=UWBxAUC9k1g

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

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
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

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
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

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
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

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
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!
http://www.youtube.com/watch?v=UWBxAUC9k1g
 
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

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
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

  • Jr. Member
  • **
  • 18
    • View Profile
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

  • First timers
  • *
  • 4
    • View Profile
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

  • Sr. Member
  • ****
  • 158
    • View Profile
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!

*

Offline underwater

  • Sr. Member
  • ****
  • 158
    • View Profile
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

*

Offline deloun

  • Full Member
  • ***
  • 56
    • View Profile
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

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
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

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
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

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
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

  • Moderator
  • Neilep Level Member
  • *****
  • 8197
    • View Profile
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 »