[demografx]

WELCOME GIRLWIND!

Since only men have come around, I assumed it was strictly a male problem! Thank you for enlightening us, girlwind.

Guthrie, I agree, now other women can find us and post, too. And as I mentioned earlier, from personal experience, I'm convinced that orgasm, not ejaculation, is the key to POIS.

Girlwind, as you can see from earlier posts, Levitra "cures" 75% of my symptoms, a combination cure of POIS-cycle length and severity. If it's a potential cure, I wonder what that implies for women since it's a male ED drug? Some people here have posted ideas that it's just a part of Levitra that does the trick for POIS. I agree.

I hope you read the posts relevant to our looking for a research endocrinologist to study all the posts here and make some sense of it all. Your input is most welcome. I suspect that somewhere in all the information revealed in this POIS Forum lies a cure for this horrible malady. I think I can safely say "horrible" for all afflicted because it has ruined a chunk of our lives. Even when we are not actively suffering POIS symptoms, they can feel like they're "just around the corner" waiting to happen!

Girlwind, you ask great questions. Almost no research has been done to date. If you Google Marcel Waldinger, a Dutch MD, he is the only published POIS researcher known, and he first described the name Post Orgasmic Illness Syndrome, or POIS. The number of subjects he studied is very small, so this POIS Forum is probably the largest single repository of POIS knowledge!

Girlwind, a question for you: do your orgasmic dreams also create POIS? Welcome again.

[jeroboam]

Have any other persons also noticed the corelation between the quality of the orgasm (the feel good feeling (=amount of dopamine released when orgasming?)) and the bad after-effects? That they are worse when you have a 'better' orgasm?

[girlwind]

Hello guys! It is feels somewhat weird to be the only woman in the discussion so far, but hopefully I will inspire other women to come forward. I actually wrote
one of the Berman sisters a few weeks ago about my symptoms--Jennifer Berman, who is a MD gynecologist in LA specializing in women's sexual issues. When
I described my symptoms to her, she responded in her email back to me that I had "orgasmic disorder," and that I "wasn't alone." But when I looked up orgasmic
disorder, it was all about women who were NOT orgasmic, not about women who had post orgasmic exhaustion. I'm going to email her the link to this discussion
today, so she can get some education about POIS. Unfortunately, in my way-too-long experience with both CFIDS and POIS, medical doctors have too often proven themselves to be over-rated and under-qualified to deal with the mysterious and complex intricacies of the immune and endocrine systems. And after what I have
read here and experienced in my own body, I totally agree that any research about POIS should be focused in large part on the endocrine system. Though I also
think there's a significant link to the immune system, due to the fact that POIS for many of us includes the onset of cold or flu-like symptoms.

Even if my orgasm happens in my sleep, in a dream state which I awaken from mid-orgasm, I experience POIS. However, I have found that those orgasms that
happen spontaneously in a dream state have shorter lasting negative effects than the ones I have "consciously." I've actually kept track of when the dream state
orgasms occur, and over 90% of them have happened mid-cycle, right around the time of ovulation. I've speculated that the exhaustion I feel is less just because
of that. At mid cycle is when progesterone peaks in women... and progesterone is one of the top of the chain steroid hormones. I think this means that I have
enough of an "excess" of steroid hormones to spare at those times, and maybe that's why the POIS symptoms aren't as bad then. Also, because it's the adrenal
cortex that produces the steroid hormones, I think that's why adrenal boosting supplements have helped me to sometimes remedy the POIS symptoms.

demografx: I googled Levitra and read up a bit about it. It's known as a PDE5 inhibitor--does anybody know what that means? I know Levitra increases blood
flow, but HOW exactly it works in the body might be a clue as to why it helps the symptoms of POIS. Because there are some potentially very risky side effects
from taking Levitra, especially prolonged use--like "serious cardiac events" (as in heart attacks), penile tissue damage, and potential loss of vision, due to a
decrease of blood flow to the optic nerve--that isn't something I would want to experiment with. In general I am more inclined to using vitamin supplements,
herbal remedies and hormonal cremes. (I've had far too many side effects and allergic reactions to pharmaceuticals.)  But I'd like to know more details about
how the chemistry of Levitra affects steroid hormone production, or if there is a link along those lines.

[solution]

The process in my view is: orgasm generates something in the brain that generates something in the stomach that generates all ills.
So I think that not finding a remedy for the brain we should tackle the problem in the stomach that produces so many ills

[imre1]

It's been a while since i last posted anything in this thread.

I was just wondering if anybody would be willing to meet other people with this condition in second life?

I would like to create such a place but I have no idea wether people would come.

[pyropeach]

It's known as a PDE5 inhibitor--does anybody know what that means?

PDE5 is an enzyme that is within the pathway of muscle contraction for smooth muscle tissue.  If this enzyme is inhibited, the smooth muscle cannot contract and remains relaxed causing blood to remain in the penis to prolong erections.  PDE5 is also found in lung tissue.

I was just wondering if anybody would be willing to meet other people with this condition in second life?

 

What do you mean by second life?

[imre1]

What do you mean by second life?

The metaverse: http://secondlife.com/

Where people can meet almost face to face. In a level that very closely resembles real live communication.

[imre1]

Hi fellow POIS sufferers

Do you folks find that POIS seriously affects every aspect of your life everyday ?.
I find this a very powerful illness which affects me everyday. This is because the mental symptoms linger for so long after an orgasm.

Here is my story thay I recently sent to an emotional support group:

I have had an illness my entire live that makes me allergic to sex. This means that I often have very heavy pain. On top I have fear for everything that has to do with sex and I am often afraid to go to sleep (because of the chance on wet dreams).

For this illnesss there is currently no treatment and I know no doctor who can help me. All doctors that I have visited send me away without answer. Only since shortly I know what is wrong with me. Before that there was only pain, a lot of pain.

On a relational level I can not handle relationships. Because of this illness I am locked up at home and I have a lot of problems to leave home. I have also a lot of fear to handle girls. Therefore I also don't have any friends.

Since shortly I am on second life. I find second life very fun because it allows me to at least virtualy go out.

But when I look around me in second life I see everywhere people that have found other people. This is very hard for me because it reminds me of what I will never have.

I have been in many places in second life and I have met a lot of people. Among which a lot of gay people. Most people have problems with gay people but I find them to be the nicest people.

With my illness I am also a little jealous of them. They at least have people that are like them. Like me there is nobody. I am staying alone and I don't belong anywhere. With hetero people I don't have so much a connection. They are always too much busy with sex.

[chris]

It's been a while since i last posted anything in this thread.

I was just wondering if anybody would be willing to meet other people with this condition in second life?

I would like to create such a place but I have no idea wether people would come.

Why don't you come to the Naked Scientists broadcast in second life on Sunday (10am SL Time / 6pm UK Time) and then you can meet after the show and chat...?

[Bizzy]

Imre1 thanks for your previous post. It lets us know that this condition can be part of a greater complex for many POIS sufferers. The greater complex can come in different flavours and some people have it pretty bad.
I think most of us have some core POIS symptoms such as tiredness, brain fog, speech difficulty, depression and flu like symptoms. Some of us have a few odd-ball symptoms as well that noone else seems to have. We can be sure that these are part of POIS too because they happen everytime post orgasm for that person.

[pyropeach]

I am about to go insane.  If I talk about this to anyone else, they won't understand and I don't want to see their confused expression and hear their useless advice.  At least you guys understand.  I simply have to talk about this somewhere...I am in hell.  I just had a few orgasms in the past few days, even writing this is taking me forever.  I simply can't function. I have homework and exams coming at me from left and right.  The brain fog, lack of concentration, speech difficulty, depression, headache,  and utter exhaustion has completely ruined my hopes of everything I seek for in the future.  It hurts so damn much - knowing I can never be in an intimate relationship, where I have to turn down opportunities with girls despite my desperation, let alone go to graduate school and achieve the goals important to me, and knowing my future is pretty much screwed. I have to drag myself through each agonizing day trying to avoid people and struggle to act normal until the symptoms stop while in constant fear of getting a wet dream.  I cannot live like this.  It feels like my scalp is sore from overexertion.  Does anyone else get this symptom? Where it feels like the muscles of your scalp are constantly tightened around your skull and it feels sore almost like a burning feeling?

We need more data.  These tests we get from the doctors who look at us funny are a joke; we need a group of some sort to research this in a laboratory setting...I've had it with doctors.  And all these supplements I've been taking don't really seem to do much.

Well, I think I've vented enough. 

I was just wondering if anybody would be willing to meet other people with this condition in second life?
I would like to create such a place but I have no idea wether people would come.

I'd be willing; in fact I'm about to make an account on second life.

[jeroboam]

First time I measured my temperature when suffering from POIS: 5 hours after my temperature was 37,5°C .. So i've got a fever. Is this so with everyone?

[jeroboam]

Is there any chance this could be related to sexual transferable diseases?

[demografx]

Have any other persons also noticed the corelation between the quality of the orgasm (the feel good feeling (=amount of dopamine released when orgasming?)) and the bad after-effects? That they are worse when you have a 'better' orgasm?

I have wondered about this too. But I only noticed the reverse, i.e., with VERY low intensity orgasm, the POIS symptoms can still be excruciatingly negative, i.e., very bad. I have also noticed that MULTIPLE orgasms can lead to horrific POIS compared to single-orgasm.

Now that you brought it up, maybe we can all take a closer look. Thanks.

[demografx]

Is there any chance this could be related to sexual transferable diseases?

In my case, I don't think so. My POIS goes back steadily to at least 25 years ago, and probably longer.

[demografx]

demografx: I googled Levitra and read up a bit about it. It's known as a PDE5 inhibitor--does anybody know what that means? I know Levitra increases blood
flow, but HOW exactly it works in the body might be a clue as to why it helps the symptoms of POIS. Because there are some potentially very risky side effects
from taking Levitra, especially prolonged use--like "serious cardiac events" (as in heart attacks), penile tissue damage, and potential loss of vision, due to a
decrease of blood flow to the optic nerve--that isn't something I would want to experiment with. In general I am more inclined to using vitamin supplements,
herbal remedies and hormonal cremes. (I've had far too many side effects and allergic reactions to pharmaceuticals.)  But I'd like to know more details about
how the chemistry of Levitra affects steroid hormone production, or if there is a link along those lines.

Girlwind, thanks for the WARNINGS about Levitra, especially as it relates to the heart. I have posted that caveat often, and it needs to be repeated.

I know that we often get desperate enough to try anything!! So the word of caution.................

Our listmember B_Jim has good ideas about Levitra having a dopaminergic and stimulant component. Also, if we can get an endocrinologist as a POIS Advisor - which we're in the process/trying to do - maybe we'll all learn more about a "safer" cure than Levitra.

[demografx]

I am about to go insane.  If I talk about this to anyone else, they won't understand and I don't want to see their confused expression and hear their useless advice.  At least you guys understand.  I simply have to talk about this somewhere...I am in hell.  I just had a few orgasms in the past few days, even writing this is taking me forever.  I simply can't function. I have homework and exams coming at me from left and right.  The brain fog, lack of concentration, speech difficulty, depression, headache,  and utter exhaustion has completely ruined my hopes of everything I seek for in the future.  It hurts so damn much - knowing I can never be in an intimate relationship, where I have to turn down opportunities with girls despite my desperation, let alone go to graduate school and achieve the goals important to me, and knowing my future is pretty much screwed. I have to drag myself through each agonizing day trying to avoid people and struggle to act normal until the symptoms stop while in constant fear of getting a wet dream.  I cannot live like this.  It feels like my scalp is sore from overexertion.  Does anyone else get this symptom? Where it feels like the muscles of your scalp are constantly tightened around your skull and it feels sore almost like a burning feeling?

We need more data.  These tests we get from the doctors who look at us funny are a joke; we need a group of some sort to research this in a laboratory setting...I've had it with doctors.  And all these supplements I've been taking don't really seem to do much.

Well, I think I've vented enough. 

I was just wondering if anybody would be willing to meet other people with this condition in second life?
I would like to create such a place but I have no idea wether people would come.

I'd be willing; in fact I'm about to make an account on second life.

PYROPEACH, hold on to your hat! We're looking for a research endocrinologist. I BELIEVE THAT A CURE EXISTS IN THE POSTS OF THIS FORUM! After 25+ years of my own misery, I have personally experienced the "miracle" of a 75% cure! I'm so angry and greedy right now that I want the other 25% as badly as I wanted a cure before.

Sore scalp? I get burning fingertips which drive me insane. I suspect they're different manifestations of the same problem.

We're all here with you, pyro.

I will consider second life, but it sounds complicated.
(I complicate things easily [] )

[pyropeach]

Is there any chance this could be related to sexual transferable diseases?

It can't be because I'm a virgin and have POIS full blast.


As for secondlife, I'm named Pyropeach Paule if you want to locate me.

Demografx, thanks for the reassurance, I need every bit of slack I can get these days...

[demografx]

First time I measured my temperature when suffering from POIS: 5 hours after my temperature was 37,5°C .. So i've got a fever. Is this so with everyone?

I don't get a fever, but this is consistent, in my opinion, with Dr Marcel Waldinger (pioneer POIS researcher)and his description of "flu-like symptoms".

[pyropeach]

We're looking for a research endocrinologist.

How is this being done? And is there anyway I can help?