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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6429367 times)

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15800 on: 18/03/2012 22:38:11 »
WOW, I'm touching base here after a couple of weeks of very intense work on the home front, and unfortunately I've got a fair bit more left to do. Lots of action here, especially in the donations department. Gives me a lump in my throat! I'm having trouble keeping the total up to date over at SMF. I've asked for an official total because I think my total is short. So Monday or Tuesday we should have a correct number. I have to finish keeping the donations/pledges list up to date. We are starting to convert those pledges into real dollars, How wonderful.
 

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.

Great post Mel, particularly the last sentence! I thought it was worth repeating! Sometimes a few spare minutes here and there can really do a lot to move us ahead. As Mel says, he really didn't spend much time, and neither did we (Demo and I) to get POIS registered and NIH and NORD. Those simple acts MAKE US REAL, which is so very important. And just a few minutes here and there.

We are over the $6000 mark, something Demo never thought he'd see. and although it's only part of the way, there are three times that in pledges waiting. But the good part is that it's a start and it shows commitment. The people with the big bucks, someone out there that has enough to take the $33,500 out of his back pocket is out there, just waiting to find us. But these people need to see commitment, need to see that it's real.

It's real when its people are doing what they can and struggling, putting their pennies and their minutes on the line. They know that not everybody has the big bucks, and they know that it can hurt to find $100 here or there or put together 30 minutes to do something that moves their group ahead.

We can chat and we can suppose and we can wish, but real movement takes real effort. No pain, no gain they say.

I'm not saying put everything on hold, or spend your lunch money on POIS, but say to yourself. One little sacrifice a week for a giant step for POIS IS WORTH IT.

If you've never done anything before for a cause, this is the cause and this is the moment!

And as Mel has shown, it really doesn't take much to do something that has tremendous benefit. We are very well positioned as a rare disorder for the effort of four individuals who have spent a total of maybe 30 minutes each. Imagine What 30 of us could do or 40.

I miss being here. Unfortunately I will be personally very busy in the next little while.

P.S. only 4 registered in the niacin survey. I twould REALLY like to be able to cross reference some information and see why niacin works for some and not for others!
« Last Edit: 18/03/2012 22:40:32 by daveman »
 

Offline jferr

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15801 on: 18/03/2012 22:41:50 »
Hey guys, has anyone else noticed that after doing cardio exercises such as running or playing basketball that you have sort of a weakness type headache and the cognitive symptoms seem worse? I feel like there is pressure in my head and also feel physically weak like a sugar low. I have been weight training for over 6 years and this does not happen when lifting, only when doing cardio exercises.

Thanks,

Jon.
 

Offline Habibou

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15802 on: 18/03/2012 23:18:26 »
jferr, I have exactly the same when I played football last weekend !! I do not have it when I lift weights either... I have to mention that I am in a constant POIS or CFS.
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15803 on: 18/03/2012 23:20:44 »
Pyropeach, I've responded to your post here at the poiscenter:
http://poiscenter.com/forums/index.php?topic=78.msg4231#msg4231

I believe I've given you all the info you should need to make the changes to the compendium, but if you have any more questions I'd be happy to answer them. I'll be checking both forum sites as usual.
 

Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15804 on: 18/03/2012 23:32:40 »
John21, I noticed that in one of your previous posts you mentioned you were trying saw palmetto. Did you ever get any results?

I have tried saw palmetto but it was quite a long time ago, years. I did not get any benefit from it.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15805 on: 18/03/2012 23:35:07 »

Thank you, daveman, for your upbeat post!

Demo

 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15806 on: 18/03/2012 23:35:07 »
jferr, I do get a headache sometimes during cardio exercises or even sometimes just stepping outside my house for a few minutes then upon going back inside I'll get a headache, but the headache never lasts more than about 5 minutes.

The odd thing is that these are the only times I will get a headache. I'm also constantly in a state of POIS, but only because I ejac every day.

Edit--And thanks for your response about saw palmetto, John.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15807 on: 19/03/2012 02:36:50 »
daveman
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Daveman,

Thank You for exceeding 1,000 posts in a short period of time.

Your contributions to POIS have been phenomenal!!!!
« Last Edit: 19/03/2012 03:49:11 by demografx »
 

Offline POIS-SUFFERER

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HCL, yes that is it Hydrocloric Acid (stomach acid)
« Reply #15808 on: 19/03/2012 03:13:02 »
Well its been a while since I posted, but this time I get to post some very good news for me.

About a year ago I went to a DR who told me a couple things of which I actively pursued one and not the other.

He had said I needed to take Niacin, this was before it was discussed on here, so I started taking it and it worked rather well, so for the 30-40% of the POIS that remained I tried ALL sorts of other things and nothing worked....

3 weeks ago I said to myself I need to go back to day 1, What has ailed me for many years???..... and for many years, almost all my life, I have always had heart burn, stomach upset, bad digestion......

Well this takes me back to the other thing the DR told me to take and I started taking it, and it alone, for 3 weeks now.... and I can say its made a HUGE improvement in every aspect of my body, POIS gone, heart burn gone, digestive issues gone, I am feeling rather great.....

But I have realized that all my ATIVAN usage has now taken a toll, I was using it to get by in life, cause when POIS was bad, it was BAD! So now I find myself with withdrawl symptoms from the ATIVAN, so I am now starting to try and wean myself of that stuff....

As for the HCL I take 2 tablets with every meal and thats it, not one other pill..... and it works perfectly.

What ever that DR knew with HCL and Niacin he was on the money.

Just Google "Betaine HCl 650mg"

Hope this help someone else on here too!

PS.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15809 on: 19/03/2012 03:20:38 »
Pyropeach, I've responded to your post here at the poiscenter:
http://poiscenter.com/forums/index.php?topic=78.msg4231#msg4231

I believe I've given you all the info you should need to make the changes to the compendium, but if you have any more questions I'd be happy to answer them. I'll be checking both forum sites as usual.


Vincent Marcus, many thanks for contributing to The POIS Compendium!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15810 on: 19/03/2012 03:23:27 »

POIS-SUFFERER, thank you for sharing your successes!
 

Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15811 on: 19/03/2012 16:47:09 »
Hey guys, has anyone else noticed that after doing cardio exercises such as running or playing basketball that you have sort of a weakness type headache and the cognitive symptoms seem worse? I feel like there is pressure in my head and also feel physically weak like a sugar low. I have been weight training for over 6 years and this does not happen when lifting, only when doing cardio exercises.

Thanks,

Jon.
So exercises requiring anaerobic respiration are worse? I'm trying to remember but was it you Jon who said you had problems with bad stomach bacteria? (i.e. Helicobacter Pylori). I know that not everybody buys the POIS as allergy suggestion but if that was you then you might need treatment for the bacterial and/or a resulting fungal growth in your gut. It might seem odd but any kind of fungal infection in your gut will enjoy a growth spurt and sap more of your energy during anaerobic exercise. I'm not saying this is the only explanation as there are many so if I've misrecollected that you had gut problems then forgive me.

I've been increasing the amount of natural yoghurt I put in my smoothie and I've noticed I'm becoming less allergic in general. Less rashes, itches and sinus trouble. I'd be very interested to see if POIS sufferers have any other allergies such as skin problems (hives, acne, ...), stomach cramps, IBS, asthma, etc.
 
My doctor also found indication of fungal infection on my skin and prescribed me a strong dose of anti-fungals. For whatever reasons increasing my zinc levels and getting extra "healthy" gut bacteria from yoghurts also appears to improve things. Then there's the kick my brain gets from spirulina and blueberries and it gives me some motivation. The healthier and the less allergic reactions I get in general,  the less I suffer from POIS. So I keep thinking that the kind of POIS I suffer from (perhaps there are many kinds) is due to some underlying immune problem and is closely related to the gut problems I've had for years.
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15812 on: 19/03/2012 17:50:44 »
Nordnurse (thanks!) has reminded me that ebay is a great way to convert stuff you no longer need into cash. Sell your old and unwanted stuff. People will buy anything! I just sold an old toy from my childhood that my dad found in the loft. I got 5 for it. Not much but it was just a test to check my account etc was working. Now I'll be auctioning off more stuff. Even 5 sales add up and hopefully I have some things that will fetch more...

So! Your homework  ;D (ie do just one fundraising thing over the next 2 weeks) could be simply selling something on ebay and donating the proceeds to our research grant fund here:  https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3
(just select "Post-orgasmic illness syndrome" from the pull-down menu under where it says 'Research Fund' on the form)
 

Offline Hoping

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15813 on: 19/03/2012 21:46:56 »
Hey everybody. Just to clarify... what is the threshold we're expected to raise by March 31st? Is it the full $33,500? If we don't hit the threshold by the deadline, do we lose the money for POIS research?
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15814 on: 19/03/2012 22:51:13 »
Hi Hoping,

Good question. I'm glad you asked because I suspect you are not the only one who isn't sure about how this works.

The $33500 is the MINIMUM required to start putting research into action.  If we don't make the $33500 by 31st March, we do NOT lose the money for the POIS research. The money we have so far donated stays dedicated toward POIS as long as we keep meeting certain minimum targets (which we have already done for now). What we do lose is the opportunity to set the wheels in motion this year. We would have to wait until April/May 2013. Nothing can happen until we get the $33500. Personally, POIS has taken enough of my life. I don't want to wait another year to get this going and I suspect neither does anyone else.

Here is a quote from the NORD website which expands on the targets:

      If the total of donated funds for research on a specific disease is less than $1,000 after two years without significant donations, the fund will be transferred to general research and related activities.
      If the total of donated funds for research on a specific disease is more than $1,000 but less than $5,000 after four years, the money will be transferred to research on related diseases. (e.g., neurological, metabolic, connective tissue diseases, etc.)
      If the total of donated funds for research on a specific disease is more than $5,000 but less than $10,000 after six years, the money will be transferred to research on related diseases.
      If the total of donated funds for research on a specific disease is more than $10,000 but less than $15,000 after eight years, the money will be transferred to research on related diseases.
      If the total of donated funds for research on a specific disease is less than $25,000 in ten years, the money will be transferred to research on related diseases.

For more information you can visit the relevant web page:
http://www.rarediseases.org/medical-professionals/research-grants/policy

Its important to note that, even if someone finds an effective treatment tomorrow, there would still be more research to be done. There's not much danger of the research fund going to waste even if someone has a sudden breakthrough. We'd still need to know why the treatment works. (eg. niacin helps some sufferers but we don't know why). We don't know the underlying cause of POIS and I suspect it could be slightly different, in different groups of people (eg something different could be going on in those who have muscle aches and sweats to those who don't). We don't know how prevalent POIS is. There are so many questions to answer beyond finding an effective treatment/cure (although that of course is what we need as soon as possible). This is the tip of the iceberg. Its an opportunity to pave the way not only for our own future health but for everyone who suffers POIS in future. And to raise the profile of POIS to reach those who haven't found our forums yet and to inform their doctors so they recognise the symptoms. As Porke said recently, we are pioneers. No one's going to do it for us, at least not with any urgency. So we have to push this on ourselves.
« Last Edit: 19/03/2012 22:55:39 by mellivora »
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15815 on: 19/03/2012 23:13:15 »
I have some words of caution to add to POIS-SUFFERER's post about betaine hcl. I tried it recently and it had some negative effects for me. I hope it's only temporary, but it seems to have worsened my condition overall. It may only be because I broke the tablets into smaller pieces at first and perhaps breaking the outer coating before taking the tablets made it somehow harmful to my system, or perhaps I'm just abnormally sensitive to the betaine hcl. I've known for a while now that POIS causes a lot of inflammation to occur in my body so I'm hoping that what happened is that when the betaine hcl encountered my already irritated digestive system it brought the inflammation to a level beyond which my body could handle.

The brand was Thompson and the tablets contained 324 mg of betaine hcl and 39mg of pepsin each. The first day I took about 1/8 of a tablet, the second day I took half a tab, then the third day still noticing no effect I took a full tablet. Every time I even made sure to eat plenty of fatty foods prior to taking the tabs and I drank milk afterwards every time. I've never had any gastrointestinal problems in the past and I've never even had heart burn, but I do usually experience some bloating after eating a large meal.

It's been almost 3 weeks now and just 2 days ago my throat was still sore somehow from the betaine hcl and even now my stomach still has a slight burning feeling when I get hungry that I haven't felt before in the past. All of my symptoms are still in a worsened state as a result, but I feel I have been improving during the last couple weeks. My other treatments are enough to keep me out of any physical pain, but when I try to exercise my joints begin to hurt again- although again it seems to be getting better.

I was going to report this sooner, but I felt like I hadn't given it enough time and also I felt embarrassed for having made such a stupid error. I went to see my psychiatrist today and I couldn't even look him in the eyes, because my eye burning had gotten worse. This infuriates me.

Although don't let my oddly negative experience put you off of trying betaine hcl. Just be careful with it is all.

edit- I forgot to mention that the negative effect of the betaine hcl came on very slowly. The first thing I noticed was that the morning after I had taken the full tablet my stomach had a slight burning feeling, but barely noticeable. There were no other direct symptoms besides that and the sore throat.

-Also I've taken a multivitamin that contained 25mg of betaine hcl in the past, once about a year after I developed POIS and briefly about a year or two ago, and I had no problems with it at those times.
« Last Edit: 19/03/2012 23:27:38 by Vincent Marcus »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15816 on: 20/03/2012 00:42:36 »

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?



You're right, Pyro, Wiki-style could ruin it. I used the term "Wiki" too loosely. Many thanks for continued involvement and CONGRATULATIONS ON YOUR MARRIAGE, PYROPEACH!!!

« Last Edit: 22/03/2012 00:00:55 by demografx »
 

Offline Stef

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15817 on: 20/03/2012 02:13:10 »
Nordnurse (thanks!) has reminded me that ebay is a great way to convert stuff you no longer need into cash. Sell your old and unwanted stuff. People will buy anything! I just sold an old toy from my childhood that my dad found in the loft. I got 5 for it. Not much but it was just a test to check my account etc was working. Now I'll be auctioning off more stuff. Even 5 sales add up and hopefully I have some things that will fetch more...

So! Your homework  ;D (ie do just one fundraising thing over the next 2 weeks) could be simply selling something on ebay and donating the proceeds to our research grant fund here:  https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3
(just select "Post-orgasmic illness syndrome" from the pull-down menu under where it says 'Research Fund' on the form)

Hi All,

As a follow-up to mellivora's post about Ebay, ironically, my husband decided right around the same time as melivora did to finally test the Ebay waters -- really just for the experience -- and managed to sell some obscure little electrical "thing" that he'd purchased at a flea market.  He bought a bunch of them for less than $5, specifically to sell on Ebay. 

He opened an Ebay account last week, posted this "thing" (I can't explain what it is, despite having looked it up online -- it's a "pro-crimper die set") -- and boom! It sold in less than a week!  What cost him less than $1 US to purchase, sold for ~ $50 on Ebay.  His only expense was postage to send the item to the buyer (~$3) and Ebay's charge (for his item, the Ebay charge was ~ $4).

People will buy anything!  Ash trays, picture frames, ties, books, records (very popular on Ebay), tea pots, gloves, frames for no-longer used glasses, scarves, that sweater your ex-girlfriend gave you, coffee mugs, old guitars, sports paraphernalia, etc, etc.

Just think of the Xmas/Chanukah gifts you've never used, that are probably still in their original boxes!!

What have you got to lose (aside from some clutter)!!!

Then put that money in your fund!

You are getting closer and closer each day to that goal -- and if those pledges convert into actual donations -- you'll be astonished by the seemingly magical way it all all suddenly comes to fruition right on time!

So just go for it!!!  This is not impossible, and in fact -- with the recent flurry of donations -- totally possible!!

With comrades like Mel, Demo, Daveman, Cc (forgive me, those of you who I'm forgetting about at this moment -- it's late in Connecticut!) ... and those very,very brave front line warriors, Animus and Observercenter -- you cannot lose here.  There's so much brute force in your group! 

You are really on your way to getting past go!

Stef



 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15818 on: 20/03/2012 05:36:52 »

Thank you, Stef!!

 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15819 on: 20/03/2012 11:25:36 »
Hey everybody. Just to clarify... what is the threshold we're expected to raise by March 31st? Is it the full $33,500? If we don't hit the threshold by the deadline, do we lose the money for POIS research?


Hoping.

Yes, $33,500 is the MINIMUM. If we don't make it by March 31 we have to wait another year, BUT WE DON'T LOSE ANYTHING  BUT TIME. Our money would be there until we reach the goal.

So good news, but still not so good.

We have done well, and are really showing some advance in these last days. There are near $18,000 more in pledges.... if those could be converted we'd be very close.

All we need is for someone to see how much we want this research. They need to see that we are serious. The rest could come in one simple donation, but we need to push, and make an effort, each and every one of us.

Much easier if we are ALL pushing the boat. Less force for each. And so much can be done with only half an hour per week.

Is half an hour per week worth real advances in POIS?

Who knows, maybe if we come close we can convince NORD to give us a little more time!!

 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15820 on: 20/03/2012 22:39:40 »


Vincent Marcus, thank you for pointing out the cautions with betaine hci!

 

Offline Quasar

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15821 on: 20/03/2012 22:52:38 »
I've been reading about Vasopressin (ADH). It's very interesting because it's a hormone that could explain 2 symptoms we suffer from: post-org. dehydration and venous system issues.

Please take a look and tell me if you find it interesting or not: http://en.wikipedia.org/wiki/Antidiuretic_hormone
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15822 on: 21/03/2012 01:08:37 »
I was considering Vasopressin for overactive bladder, but I didn't like what I heard about its side effects.
 

Offline demografx

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Offline victor.kons

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15824 on: 21/03/2012 19:02:08 »
Hi Guys,

If we get enough donations/pledges such that we look sure to make the funding, I'll donate another $800
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15824 on: 21/03/2012 19:02:08 »

 

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