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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6440739 times)

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15775 on: 15/03/2012 18:24:25 »

I have 50% less symptoms thanks to the desens program.


Amazing!

This happened to you in months??

Dr Waldinger recently told me by telephone that he cannot see any desens improvement results before one year!
« Last Edit: 15/03/2012 18:26:16 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15776 on: 15/03/2012 19:07:23 »

Thank you, mellivora!!!!!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15777 on: 15/03/2012 19:15:26 »

To be honest with you guys, I am very skeptical about Dr Waldinger and the 'sperm allergy / reaction' theory

mod edit: emphasis above is mine - demo



Now I'm 99% convinced I'm not an immune/allergy pois's case too. It's hormonal. I want to try testosterone as soon I can. Demo was right since the beginning.



I'm not quite buying it either. I'll be looking in, around, and outside the box for the answer until someone figures it out.


Don't worry, Porke, B_Jim, and John21, you have plenty of good company at the forum :)



"Hmm. POIS = allergy???"


« Last Edit: 15/03/2012 19:33:29 by demografx »
 

Offline mat780

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15778 on: 15/03/2012 22:13:41 »
Please, add $100 more to our POIS Medical Research Fund.
I've just had the confirmation from NORD.

Now is THE time to make those pledges real   :)
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15779 on: 16/03/2012 01:36:24 »

I have 50% less symptoms thanks to the desens program.


Amazing!

This happened to you in months??

Dr Waldinger recently told me by telephone that he cannot see any desens improvement results before one year!


I am doing the injections almost a year. And my dillution scheme was quicker then the first patients.


Thanks for the update, Vandemolen3.

I really love to see improvement, regardless of the treatment.

We are all at the very beginning stages of understanding POIS - and how much it varies from individual to individual.

 

Offline victor.kons

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15780 on: 16/03/2012 08:10:38 »
Sent another $100 to NORD
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15781 on: 16/03/2012 08:15:14 »
Sent another $100 to NORD

Victor that's awesome, thank you! What a great thing to read this morning.
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15782 on: 16/03/2012 15:04:52 »

To be honest with you guys, I am very skeptical about Dr Waldinger and the 'sperm allergy / reaction' theory

mod edit: emphasis above is mine - demo



Now I'm 99% convinced I'm not an immune/allergy pois's case too. It's hormonal. I want to try testosterone as soon I can. Demo was right since the beginning.



I'm not quite buying it either. I'll be looking in, around, and outside the box for the answer until someone figures it out.


Don't worry, Porke, B_Jim, and John21, you have plenty of good company at the forum :)



"Hmm. POIS = allergy???"




I'm very grateful that Dr Waldinger is trying to do anything at all about POIS, even if he sometimes seems secretive and non-sharing in his ways. The papers he has published have helped give us credibility. I'm not sure either if he's on the right track. If I were to guess, I'd say probably for some of us he is and for some of us he isn't. But I don't know. I'm sure he himself would admit he doesn't have all the answers. And if immunotherapy works for some, it'll still be unknown what it is specifically in semen that's causing the problem.

We've all struggled with POIS for far too long. How much longer we struggle with POIS depends on us. POIS exists so there is an explanation for it. We need more research and the reality is we need to raise money for it to happen.

Imagine one of your best friends, or a brother or sister, revealing to you that they have a rare illness and they've been suffering silently with it for years. It's wasted years of their life and all this time you've known them, you didn't even know about it. They didn't feel able to talk about it. Your best friend. They recount to you the story of everything their illness has affected in their lives: career and other life aspirations, friendships, family, lovelife. You had no idea. You learn that little is known about their condition and they're desperately trying to raise money to get their illness researched and find a solution.

I'd give some money toward my best friend's health in this situation, who wouldn't? You're worth helping too. Every cent helps. Please help yourself, help the relationships you have with those who care about you, help me to help myself and help everyone here who knows POIS firsthand like you do. That's a lot of help from one donation.
« Last Edit: 16/03/2012 15:07:12 by mellivora »
 

Offline observercenter

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15783 on: 16/03/2012 17:48:17 »
Important, for those living in Australia(and for those who do not too!)
I want to announce that ABC - Australia Broadcasting Corporation - is going to broadcast the POIS documentary on 12th April, Thursday, at 8 PM - in "The Catalyst" program. http://www.abc.net.au/catalyst/

 As you know, i decided to be interviewed in the documentary and talked about the forum, and i was recorded having an allergy test of my own semen in The Hague clinic- where Dr.Waldinger and his allergist work-. They are going to send me a copy of the program after they broadcast it, but i would really like to know beforehand your opinion, australian people!

I will share any info i could have on this topic. I hope this will help our cause!


Hi, Observercenter!!!

Major congratulations to you for making that ABC/Australia news episode possible!!!  We are all looking forward to watching it!!!

There is no question that you will have furthered the POIS cause -- and I KNOW that you will be the scene-stealer!  Your wonderful personality has shone through via every post that you've made.

Break a leg on April 12th!!

Stefanie

Wow, thank you for your very kind words,, im blushing :). It is the least i could do after you helped me (and you are going to watch how and how much :) ). If this helps to improve the life of only one person who is suffering POIS without even knowing his condition has a name- and moreover for all of us, raise the awareness of it and put us near our common objective-, it would have been worthwhile for me.

Best regards!
« Last Edit: 16/03/2012 17:52:53 by observercenter »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15784 on: 16/03/2012 19:13:59 »
THANK YOU, OBSERVERCENTER, FOR YOUR TERIFFIC PROMOTIONAL WORK ON OUR BEHALF WITH THE ABC-TV AUSTRALIAN DOCUMENTARY ON POIS!
« Last Edit: 16/03/2012 19:16:16 by demografx »
 

Offline badgerstripe

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15785 on: 16/03/2012 21:30:39 »
I pledged another $50 to the POIS research fund and have just converted it to an actual donation. I would love to get to the bottom of this POIS, I am feeling the negative effects of it today quite strongly. 
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15786 on: 16/03/2012 22:09:10 »
I was wondering if we could still make changes to our POIS compendium website as currently antihistamines are located in the "unsuccessful remedial methods", but in light of the multiple members who now claim its efficacy in dealing with POIS (including myself) I'd like to see it moved to the "successful" section. 

Here is the site I'm referring to: http://sites.google.com/site/poiswebsite/test-page/unsuccessful-methods/antihistamines

In addition perhaps saw palmetto could be added there as well as it has been working well for me for a good number of months and I know there were some others it worked for too.

And Niacin hasn't been added there yet.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15787 on: 17/03/2012 02:02:34 »
I was wondering if we could still make changes to our POIS compendium website as currently antihistamines are located in the "unsuccessful remedial methods", but in light of the multiple members who now claim its efficacy in dealing with POIS (including myself) I'd like to see it moved to the "successful" section. 

Here is the site I'm referring to: http://sites.google.com/site/poiswebsite/test-page/unsuccessful-methods/antihistamines

In addition perhaps saw palmetto could be added there as well as it has been working well for me for a good number of months and I know there were some others it worked for too.

And Niacin hasn't been added there yet.

"Pyropeach" the Compendium author, is on leave of absence. If you are interested in contributing to the compendium as a "Wikipedia-type" editor, please PM him!
« Last Edit: 17/03/2012 02:04:59 by demografx »
 

Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15788 on: 17/03/2012 09:25:38 »
We do really need some solid research done. I am hoping that the fund is put to good use. I contributed $100 this week.
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15789 on: 17/03/2012 15:02:21 »
Thanks so much badgerstripe and John21 for your donations and for echoing the fact that we need solid, direct medical research into POIS if we're going to figure it out.


I want to announce that ABC - Australia Broadcasting Corporation - is going to broadcast the POIS documentary on 12th April, Thursday, at 8 PM - in "The Catalyst" program. http://www.abc.net.au/catalyst/

 As you know, i decided to be interviewed in the documentary and talked about the forum, and i was recorded having an allergy test of my own semen in The Hague clinic- where Dr.Waldinger and his allergist work-. They are going to send me a copy of the program after they broadcast it, but i would really like to know beforehand your opinion, australian people!

Observercenter, I add my thanks to those of others on this forum. What you have done is truly remarkable. You have single-handedly made a massive contribution to publicising our cause. Its a terrific contribution and I hope we can make the most of what you have done for us. Thanks for deciding to do this. It would have been so easy to sit back and not act on your idea to take part but that's not what you did :)
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15790 on: 17/03/2012 15:03:23 »
Guys, if you have an idea on how to raise funds for the NORD grant, please act on it. Its important to be mindful of all our forum members but we don't have too much time for canvassing everyone's opinions before writing a letter to a company or putting an appeal on a website. I'm sorry to be blunt but it seems that very few people here are putting their ideas into action. Those people that are doing so have not been appointed to do so, they've recognised that they need to act to help themselves. By doing so they are helping everyone else here. But they can't succeed alone.

 We all put a huge effort into just coping with POIS and its amazing that we get by as we do. Those people who are converting thoughts to actions have POIS too. They fight through the lethargy. Please don't just post about ideas, act on them. For the next two weeks could we please each all do one thing, just one, toward the NORD fund? This could be making a donation, getting a donation from someone close to you (I bet that if they know about your condition and were aware of the NORD fund they'd give something - even $5- to help you), writing to a company or posting an appeal on a website. Or something else.

Its important to share experiences of POIS and post about our experiments with potential remedies. The knowledge gained from those kinds of posts has helped all of us to an extent and some of us enormously. But for the next two weeks could we please all do one thing toward trying to raise funds.

A post from Demo I haven't yet replied to asked me to explain how I managed to get POIS officially listed and recognised on Orphanet, the European database of rare diseases. Well let me tell you it was easy. I just wrote one email. I got a reply. Then over the following few months I sent three or four very short emails (of two or three lines) politely chasing up my first letter and asking for an update on progress. It hardly took any time. The crucial step was in deciding to put aside 30 minutes to write the first email.  I acted on an idea and it didn't take any longer than watching a 30minute tv programme. You can't help the fact that you have POIS. But you can choose to do something about it.
« Last Edit: 18/03/2012 01:05:00 by mellivora »
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15791 on: 17/03/2012 15:21:17 »
For those interested, this is the initial email I wrote. As you can see, I didn't even give up my anonymity. Nor have I for any approaches I've made to outside funders so far. I'd like to add that I had the idea to write to Orphanet after Daveman and Demo successfully managed to get POIS listed in the National Institutes of Health database in the States (presumably with a similar letter and approach).  Stefanie from NORD gave invaluable advice and encouragement. Without her and Daveman and Demo, the idea might not even have come about. At the end of the day, as I said, all I did was decide to write one letter and followed it up. You never know where things can go and the difference you could make with just 30 minutes of your time.

Dear [I've removed the name of my contact there - I got her name from the orphanet website],

I am writing as a sufferer of a rare illness that I don't believe is listed on your database. I would like to get it listed. The National Organisation for Rare Disorders (NORD) in the USA encouraged me to approach Orphanet.

The illness is Post Orgasmic Illness Syndrome (POIS).  A summary of the symptoms as described by Dr Marcel Waldinger of the Netherlands can be found here:

http://post-orgasmic-illness-syndrome.com/en/index.html

I have attached papers about the illness from the Journal of Sex and Marital Therapy, Journal of Sexual Medicine and a review of two of these articles from Nature. An internet forum for sufferers of this illness (details below) was started in February 2007. A newer, more organised forum came into effect this year. We have found more than 300 sufferers worldwide.

Thanks to the hard work of sufferers, POIS is now an officially recognised rare disorder in the USA and is listed in the database of the National Institutes of Health (NIH).  Additionally, our forum is listed in the patient organisations database at NORD. Currently we are working toward raising money for a NORD research grant. 

As far as I'm aware, there are two teams currently researching POIS. One is led by Dr Marcel Waldinger (who was the first to describe the illness in his 2002 paper) in the Netherlands, the other by Dr David Goldmeier in the UK (contact details below). I am now a patient of Dr Goldmeier myself. However, although awareness of the condition is increasing, it is still little known by GPs and other medical professionals. Sometimes, we find GPs are quite dismissive of our condition, not least because they cannot find it listed in their databases. I believe an official listing of our condition in the UK and Europe would be a great step in our fight to find an effective treatment / cure. It is a life-ruining illness, with a range of cognitive and physical symptoms, that we are desperate to beat. I hope you will agree that it should now be officially recognised in your database.

Please do not hesitate to get in touch if you have questions. Contact details for our forums and for those currently known to be researching POIS are below. Please forgive some anonymity on my part. For now, I would like to use my username from our forum. I look forward to hearing from you,

Best wishes,
Mellivora.


Key Contacts:

Dr Marcel Waldinger
[CONTACT DETAILS REMOVED FROM THIS POST - MELLIVORA]

Dr David Goldmeier
[CONTACT DETAILS REMOVED FROM THIS POST BUT PM ME IF YOU WANT THEM - MEL]

Forums:
Original POIS forum:
http://www.thenakedscientists.com/forum/index.php?topic=6576.0

Newer POIS forum:
http://www.poiscenter.com/forums/index.php

Papers attached to this email:

Ashby J; Goldmeier D. (May 2010). Postorgasm illness syndrome--a spectrum of illnesses. J Sex Med. 7:1976-1981

Waldinger, M. D. (2002). Postorgasmic Illness Syndrome: Two Cases. Journal of Sex & Marital Therapy , 28:251255.

Waldinger, M. D. et al. (2011) Postorgasmic illness syndrome (POIS) in 45 Dutch Caucasian males: clinical characteristics and evidence for an immunogenic pathogenesis (Part 1). J. Sex. Med. doi: 10.1111/j.1743-6109.2010.02166.x

Waldinger, M. D. et al. (2011) Hyposensitization therapy with autologous semen in two Dutch Caucasian males: beneficial effects in postorgasmic illness syndrome (POIS; Part 2). J. Sex. Med. doi: 10.1111/j.1743-6109.2010.02167.x

Farley (2011), Nature Reviews Urology 8, 121 (2011). doi:10.1038/nrurol.2011.17


« Last Edit: 17/03/2012 16:13:56 by mellivora »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15792 on: 17/03/2012 21:16:14 »


Thanks Demo. I sent Pyropeach a message about it.


Great, Vincent Marcus. Please PM me directly if you do not get a timely response.
« Last Edit: 18/03/2012 00:22:04 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15793 on: 17/03/2012 21:51:03 »

To be honest with you guys, I am very skeptical about Dr Waldinger and the 'sperm allergy / reaction' theory

mod edit: emphasis above is mine - demo



Now I'm 99% convinced I'm not an immune/allergy pois's case too. It's hormonal. I want to try testosterone as soon I can. Demo was right since the beginning.



I'm not quite buying it either. I'll be looking in, around, and outside the box for the answer until someone figures it out.


Don't worry, Porke, B_Jim, and John21, you have plenty of good company at the forum :)



"Hmm. POIS = allergy???"




I'm very grateful that Dr Waldinger is trying to do anything at all about POIS, even if he sometimes seems secretive and non-sharing in his ways. The papers he has published have helped give us credibility. I'm not sure either if he's on the right track. If I were to guess, I'd say probably for some of us he is and for some of us he isn't. But I don't know. I'm sure he himself would admit he doesn't have all the answers. And if immunotherapy works for some, it'll still be unknown what it is specifically in semen that's causing the problem.

We've all struggled with POIS for far too long. How much longer we struggle with POIS depends on us. POIS exists so there is an explanation for it. We need more research and the reality is we need to raise money for it to happen.

Imagine one of your best friends, or a brother or sister, revealing to you that they have a rare illness and they've been suffering silently with it for years. It's wasted years of their life and all this time you've known them, you didn't even know about it. They didn't feel able to talk about it. Your best friend. They recount to you the story of everything their illness has affected in their lives: career and other life aspirations, friendships, family, lovelife. You had no idea. You learn that little is known about their condition and they're desperately trying to raise money to get their illness researched and find a solution.

I'd give some money toward my best friend's health in this situation, who wouldn't? You're worth helping too. Every cent helps. Please help yourself, help the relationships you have with those who care about you, help me to help myself and help everyone here who knows POIS firsthand like you do. That's a lot of help from one donation.

I'm very grateful too for Dr Waldinger's great contributions to "putting POIS on the map".

I just want to make sure - as Moderator - that EVERY POIS RESEARCHER (not just one) and EVERY CREDIBLE THEORY OR HYPOTHESIS (not just one) - should be investigated.

And to point out that, as of today, we are sorely lacking in conclusive POIS research that will take us to the next level of the medical help that we all need so badly.
« Last Edit: 17/03/2012 21:57:44 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15794 on: 17/03/2012 22:19:41 »
Mellivora, I don't know how to thank you for all your kind sentiments, thoughts, and ACTION!

 

Offline pyropeach

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15795 on: 18/03/2012 04:51:38 »
I was wondering if we could still make changes to our POIS compendium website as currently antihistamines are located in the "unsuccessful remedial methods", but in light of the multiple members who now claim its efficacy in dealing with POIS (including myself) I'd like to see it moved to the "successful" section. 

Here is the site I'm referring to: http://sites.google.com/site/poiswebsite/test-page/unsuccessful-methods/antihistamines

In addition perhaps saw palmetto could be added there as well as it has been working well for me for a good number of months and I know there were some others it worked for too.

And Niacin hasn't been added there yet.

"Pyropeach" the Compendium author, is on leave of absence. If you are interested in contributing to the compendium as a "Wikipedia-type" editor, please PM him!

Hello all, it has been a long time, and I give my apologies for my long absence and not tending to the compendium. For the past year or so, I've been everywhere...literally.  And now I'm in Singapore.   Also, I have great news regarding my POIS,  IT HAS ALMOST COMPLETELY DISAPPEARED!  What happened?  I got married, and with all the charged/positive emotions involved, I find myself almost POIS free (able to read, think, regain much of my cognitive functions) after O.

SO...as for the compendium, I've started making the additions for niacin and Animus's success, but didn't have the chance to complete them and now will do so.  Also, semen regeneration theory will also be added, but as I recall, there wasn't much research to be found on it.  As for putting antihistamines in the succesful section, I'm all for it, just need more details about the  type of antihistamine, the dosage, etc.  Vincent Marcus, I think it would be best to talk about the details here at the suggestion section here http://poiscenter.com/forums/index.php?topic=78.0, including your experience with Saw Palmetto. 

Making the compendium into a wiki-style site?  I'm afraid that if everyone could change it, the style of writing would no longer flow and it would make it more difficult to keep up with and maintain its consistency.  It might turn into a haphazard amalgam of sentences and paragraphs written by numerous individuals. But hey, that's just my take on it, what do you guys think?

 

Offline pyropeach

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15796 on: 18/03/2012 05:11:21 »
Anyway to get an iPhone app for this forum???
 

Offline silverandcol

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15797 on: 18/03/2012 06:57:39 »
Maybe we make a POIS app? Could even put helpful hints and maybe  a log to keep track of progresses. 

Also I was doing some research on fibromyalgia and I stumbled into reading about multiple sclerosis.  I found of my pois symptoms line right up with the symptoms for multiple schlerosis.  Anyone here ever try the medications used to treat fibromyalgia or  multiple sclerosis? 

Here is a link to a quick read about it.  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001747/ [nofollow] 
Basically our attacks happens after we ejaculate I guess.


On another note, I have a feeling because of our wack immune system we will be immune to any crazy virus strains that might run rampant in the future.  Or maybe we'll\l be immune to a zombie infestion, lol.  :P
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15798 on: 18/03/2012 19:14:07 »
Quote
I have great news regarding my POIS,  IT HAS ALMOST COMPLETELY DISAPPEARED!  What happened?  I got married, and with all the charged/positive emotions involved, I find myself almost POIS free (able to read, think, regain much of my cognitive functions) after O.


I accidentally deleted John21's original post. Here it is. Sorry - demo
More evidence for oxytocin's role? Might POIS be an oxytocin-deficit-induced syndrome?


Thanks, John! Oxytocin is fascinating! But everyone, please be extremely careful, it can be a very dangerous - even fatal - drug to take!

There have been numerous oxytocin discussions at this forum:
http://www.google.com/search?q=oxytocin+pois+site:http://thenakedscientists.com&ie=UTF-8&oe=UTF-8&hl=en&client=safari

John, you probably brought this up as the body's own production of oxytocin, but I thought I would chime in with external oxytocin.

There is even an oxytocin nasal spray available to make people less shy and more "socially bonded"! Again, please use extreme caution, everyone!

Levitra, which I take periodically for POIS, has been called an oxytocin agonist.
« Last Edit: 20/03/2012 00:27:07 by demografx »
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15799 on: 18/03/2012 22:22:30 »
John21, I noticed that in one of your previous posts you mentioned you were trying saw palmetto. Did you ever get any results?
 

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Re: Post Orgasmic Illness Syndrome (POIS)
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