Username: 2sexy4mybody

I am a guy with a rare sexual illness. Its so life-ruining that one sufferer of it decided to be castrated to seek relief and start progressing with his life AMAA

15 years ago my life was turned upside-down. It was Christmas 1997. I'd just slept for 17 hours straight and when I woke up I still felt like I'd been hit by a truck. My sinuses were blocked, my eyes felt like they were bulging out their sockets, my memory was lagging, I had a sore throat and diarrhoea. I realised I was having difficulty thinking. All I wanted to do was close my eyes and sleep. I thought it was bad flu or some other virus. Doctors couldn't diagnose me as my lab tests were all ok. I was a hard-working and I suppose high-achieving guy. I don't think I'd taken a sick day in my life up to that point but I ended up having to have 4 weeks off work. And this was just the beginning

Over time , I came to realise that the symptoms appeared whenever I ejaculated (sex, masturbation or nocturnal emissions). It turned out that Christmas 15 years ago was my introduction to Post-orgasmic Illness Syndrome, a rare and totally life-altering disorder.

POIS causes severe tiredness, cognition problems, mood problems, muscle aches and feelings of fever to name just a few symptoms. In the beginning for me it would last about a month from a single ejaculation. Typically it lasts 5-14 days. Abstinence from sex/masturbation gives the only relief but that's difficult to maintain Some men find they are never symptom-free as even if they abstain from sex or masturbation they get a nocturnal emission in their sleep before their symptoms can subside. This is a life-ruining illness affecting work and relationships. When I am symptomatic I often avoid meeting friends so they don’t see the usual sociable part of me disappear into this quiet,spaced out anti social person who has nothing to contribute to the conversation. In the gaps between my symptoms, I'm a normal, intelligent, motivated and genuinely happy guy. I've met some great girls in my life and even started relationships with some but I wasn't able to sustain them . I'm nearly 40 now. I'd Like to settle and have kids but being more than friends with a girl affects my health and life too much. At least a couple of sufferers have openly contemplated suicide, I can definitely see how it can drive people to this. Sufferers typically feel they can't talk about their condition and it consumes them with hopelessness and a sense of isolation. It can easily make one depressed.

One guy, an educated professional with an advanced degree (which he got before his POIS started) took the drastic measure of castration! He was so disabled by POIS that he had his testicles and seminal vesicles removed and his ejaculatory ducts cauterised. It took him years to find doctors willing to do the procedure and had to travel to multiple countries to complete it. He succeeded in becoming POIS free and with the help of testosterone replacement therapy and other medications has been able to resume his life. The drastic action he took illustrates just how bad POIS can be.

I did countless hours of research trying to figure out what was wrong with me. Doctors weren't able to help. After a few years, I came across an online forum started by people who had what I had. It was amazing to find out I wasn't the only one going through this.

We still don't know what causes POIS. A doctor in the Netherlands first described Post-Orgasmic Illness Syndrome in 2002. One theory is that its an auto-immune reaction to our own semen - a sort of allergic reaction. Little research has been done though.

Despite the suffocating straitjacket of this illness there is some amazing positivity on our forums. We've managed to get POIS listed in the most respected rare disease databases - The National Institutes of Health in the USA and Orphanet in Europe and have done much to raise the profile of POIS. The man who underwent the castration was profiled in a tv documentary on The Learning Channel. Another guy is to be the subject of a medical documentary, to be aired on ABC, Australia in the next month.

What we really need is a dedicated medical research programme. Through the National Organisation for Rare Diseases (NORD) we are trying to raise enough money for a research grant for our condition. So far, all the money donated has been from POIS sufferers. We have collected around $6,000 from our personal donations, and a further $17,000 in pledges. The minimum amount required for the research grant is $33,500. All of those pledges will be converted into donations once the combined total reaches that magic $33,500. We have a week left to raise the full $33500 and get a grant this year , otherwise we'll have to wait until 2013.

One of our forum members noticed there have been some incredible life-transforming stories of people using reddit to fundraise. That is the biggest reason I'm here. However, we also need to raise awareness of POIS and reach out to others who must be suffering in silence. So I'm also here to answer your questions and inform about the existence of POIS. By reading this and mentioning POIS to others you are helping. If you feel you can also help us by making a small donation, that would be amazing. The place to do it is the National Organisation of Rare Disorders website here: (Please select 'Post-Orgasmic Illness Syndrome' from the drop-down list under "research fund")

You can read more about the NORD grant program here:

Visit our forums are here: and here:

To help give more insight into the impact of POIS, here are some quotes from some of our members (these are taken from actual forum posts)

my professional life is getting wasted (Currently unemployed, I actually fear employment now), my marital life is getting wasted (No wife, not even a possible prospect), my social life is getting wasted and even my Dog has been starting to stare at me in weird manners lately..I feel he's trying to tell me sometimes....: WHAT THE HECK IS WRONG WITH YOU MASTER?

I look at it this way. POIS took far too many years of my life. I made no progress for about 10 years, following the completion of a graduate degree. Anything I achieved before that was based on near total abstinence. That's really difficult to maintain in college and shows the kind of iron willpower I had. Then I fell off the wagon and I've been in a relationship for many years which has made abstinence impossible (and it was never terribly desirable anyway ). In that time my brother who doesn't have POIS and started out with about equal intelligence based on IQ tests at the start of puberty (we both scored over 150) learned 3 languages and got 2 masters degrees. It's not that POIS has made me stupid but it's taken away the point of trying to learn new things as I've known that 1) I would forget the material quickly 2) I'm too tired to apply most of it. So I have a constant reminder of the effects of POIS on my life. When you put a lost decade into perspective, it's difficult to not feel huge disappointment that my life stalled for so long. When you leave college you don't believe that the best and most productive years of your life will be written off but that's how it's worked out. Anyway, can't dwell. Onwards we march

I've managed to get myself a job, starting next week, and I'm really worried that either; - I won't be able to perform, and that I'll start to fail at the job - I set my sights too low when I applied, and that I'll feel completely unfulfilled. I program in C++ for some of my uni work, I can just about read and make sense of it and write some basic programs, whilst out POIS, soon as POIS I lose all ability to do any real work and usually sit there gazing at the screen as though I'm reading hebrew.

A message from the moderator of one of our forums:

"When I emerged from a suicidal depression (over a lifetime ruined by POIS,) I immersed myself in the POIS forum. The POIS forum gave me MEANING – finally -- a burning passion developed in me to FIGHT this 18-headed monster the only way I knew how. The forum has become a Sacred Mission for me."

POIS eats away at your spirit. It destroys your sanity.

If you decide you can donate a little to our research fund, your money will be handled with complete care, honesty, and respect -- by a most wonderful non-profit organization. And – most importantly – you will have helped the countless men (and their families) whose lives have been utterly broken by POIS.



I'm working my way through the PM's I've been sent. I shall reply. Thanks for getting in touch!

2/4/2012 I've replied to all my PM's. If I haven't replied directly to your comment yet, I apologise. I've tried to go through every one but for some reason the comments don't seem to be listed in a way that makes it easy to know I've seen them all. When I scroll through them I run into some comments several times and others I find only days after they are posted. The whole reddit experience has been overwhelmingly positive. We POIS people feel we've raised the profile of our illness and its been refreshing being able to discuss this with non-sufferers. Usually POIS is something we only get to discuss amongst ourselves on our forums or with doctors. Perhaps the best feeling was making contact with a POIS sufferer who didn't know about our support forums so its been worth it just to help him out. He spotted my IAMA when it was on the front page of reddit. The front page!!! That shows how incredible your response has been. I've also made contact with people with other rare illnesses and sharing our experiences has been beneficial. It was emotional to see people donating their hard-earned cash to help us get our research grant. You don't know me, nor I you, and yet you somehow cared enough to give some of your own earnings away. Your compassion and generosity is astounding and I can't thank you enough. You have definitely pushed us closer to securing our grant. I'm moved to say that, at last count, the total donations from reddit amount to $1010. Four figures!! I didn't know what to expect coming on here. In lots of ways, you've all helped us enormously. I'm new to reddit but here I think I've found a community I'll be hanging around in more. I hope the positive vibes and support you have given to us comes back to you whenever you need it in life.

Thank you redditors, you're amazing.


I'm not sure if anyone will see this update but just in case I wanted to give everyone who supported us an update. it's almost a year since i posted to try to raise awareness and funds to obtain a NORD grant for research into Post Orgasmic Illness Syndrome. Unfortunately, we missed the deadline for a 2012 grant but have been making great progress toward securing one at the end of March 2013. We now have over $29000 of the required $33500 for the research grant. Redditors made a significant contribution to this and for that I shall forever be grateful. I hope 2013 is a fantastic year for you.


Comments: 1989 • Responses: 35  • Date: 

breisleach1179 karma

I was diagnosed with this last year, by that Dutch doctor.

It is a bitch but can be managed. However, I have started a trial of immunisation therapy with my own sperm. It seems to be promising.

2sexy4mybody635 karma

Hi breislach, are you on our POIS forums? It seems the immunisation therapy has mixed results but is definitely helping some sufferers. Good luck!

nanohawa298 karma

I have no questions for you, but only my sincerest condolences man. I'll donate what I can.

2sexy4mybody112 karma

Hey I don't know what happened to my reply to you nanohawa. let me say again..huge thanks on behalf of all POIS sufferers..if you do donate that's amazing and I appreciate you taking time to read my post and respond.

d-nj220 karma

If you fap once, do you go ahead and fap 4-5 times in a row? As in, does that make it any worse?

2sexy4mybody256 karma

I tend to just do once. Its usually worse if I go for it again. Actually a a fap is part of my coping strategy! I schedule it for when I know I'm not going to be too busy for a while or have big social events coming up. That helps get urges out my system so hopefully I'm ready when some important work/socials come up later

d-nj96 karma

How often?

2sexy4mybody185 karma

Depends how busy I am! Seriously, these days especially if I have loads of work on or fun socials I guess I limit myself to once a month. Otherwise once every two to three weeks. Not ideal huh! But its a way to cope. The longest I've managed without is 3 months...somehow..

d-nj240 karma

Wow, that was probably like turning on a faucet.

2sexy4mybody152 karma

:) It was a relief let me tell you! After a while of holding off one gets a bit restless to say the least.

thewaybaseballgo288 karma

Well, at least you know what to do if you ever need to paint your garage.

2sexy4mybody463 karma

Not much choice of colour scheme though!

[deleted]44 karma

You should try some SSRI's. SSRI's have a well known side effect of reducing sex drive, sometimes so that it is nearly completely gone.

But if I had your condition, I would probably go for castration.

2sexy4mybody48 karma

Thanks. quite a few people on our forums have tried SSRI's not least because they became depressed after struggling with POIS. They didn't have any joy with them though...(seriously...that wasn't supposed to be a joke!)

poisguy51 karma

I have gone 4-5 times in a row back in my hornier years. After that many times am in enormous fatigue that dosnt subside for days. so yes it gets progressively worse with every fap.

wiffleball_lgnd234 karma


2sexy4mybody74 karma

Genuinely haven't heard that one and it makes even me laugh wiffleball ;)

frthplnt156 karma

In general this is the sort of thing I would dig out a throwaway for, but fuck it.

Speaking from personal experience, there is a certain spot below/behind my balls. If I put a decent amount of pressure on it (and I'm assuming my prostate) directly before/during an orgasm it feels the same, but nothing comes out. I tried it because I heard about it online, so I know its not just me. Would this prevent your symptoms?

2sexy4mybody136 karma

Quite a few people have tried orgasm without ejacualtion - a dry orgasm some people call it. It sounds like the sort of thing you are talking about. Well out of the few who have managed it one or two say it has helped them but the results are mixed. Stimulation without orgasm doesn't result in symptoms for most people. If I get a bit of leakage (some would call it precum) from stimulation, I do get some mild symptoms but nothing like an actual orgasm gives...

frthplnt46 karma

Interesting. I take it vasectomies don't help? Which mean its a problem with the semen itself, not just the sperm inside it...

2sexy4mybody81 karma

Yeah that seems to be true, at least for some/most of us. At least one guy only got POIS after he had a vasectomy reversed. Which is interesting.

breisleach30 karma

No, as the semen when it leaves the testes immediately comes in contact with a part of the body where it triggers an immune response.

the_bigwiggle31 karma

So basically you suffer from an allergic reaction to your own sperm? Does taking benedryl help the symptoms at all? Not a doctor so I don't really know how that would work but this is fascinating. I also don't mean to downplay your condition. It sounds devastating.

2sexy4mybody34 karma

Yeah thanks. Its a good line of thought as I told someone earlier. One or two people have found claritin helps them a bit. Antihistamines haven't worked for me so far. When it comes to allergic reactions there are several types, commonly called type 1, 2, 3 and 4. Maybe there is some type 1 and 4 at play. Type 4 has a sort of delayed onset and isn't helped by the usual antihistamines I don't think. That's assuming the allergic reaction theory is the correct one. In some ways it does feel like some sort of allergic reaction

MyNameIsRiffa119 karma

Im not trying to be insensitive here, but you might be the only one of us to actually accomplish no fap february.

2sexy4mybody128 karma

actually I pretty much did manage that

ZenofJen81 karma

Have you ever thought of dating someone with an allergy to semen/sperm? Then sexual activity would be off the table, but you could still be in a relationship. This is a serious question btw.

2sexy4mybody103 karma

I see your point! Some women are indeed allergic to semen/sperm as you say. I wonder how I'd find such a woman. I'm guessing there isn't a dating site that specialises in them. I'd have to randomly message someone that was discussing their problem on a forum or something! Or are you such a person?!

2sexy4mybody79 karma

Thanks all for reading (its a long post!!) nanohawa - huge thanks for whatever donation you can make if you decide to man, that's awesome.

noprostate65 karma

I'm assuming it's the ejaculate causing the reaction. Men who have had their prostate removed no longer ejaculate, but can still have an orgasm. Surgical and with risky side effects, but not as extreme as castration!

2sexy4mybody54 karma

Yeah..the trouble is, if it is a reaction along these lines, we don't know for sure what component of the ejaculate is being reacted to. Not yet anyway. It could be just one protein out of many. And it might be from the prostate or not. Also we don't know if all sufferers react to the same substance within the ejaculate. Again without the research we just can't find out. The thought of castration is too much for me to be honest! I'm holding out for a less destructive solution..

DforDrew59 karma

Internet Hug! I am so sorry to hear of your illness. I don't have any money. All I have to give is my condolences, upvote, and internet hug. <3 You will make it through this! Be strong 2sexy4mybody.

2sexy4mybody42 karma

Hug back. That means a lot. And an upvote can only help. Thanks DforDrew

jamphat32 karma


2sexy4mybody19 karma

Not genetic as far as we are aware - definitely doesn't run in the family. Came out of nowhere

glclark29 karma

If you don't have prospects for marriage, why not just get your life back by getting the castration? You've already lost 10 years. You're not getting younger. It makes me sad that your mind may be wasted waiting for something to help.

2sexy4mybody25 karma

I know what you mean. Its gotten easier for me to cope with age. Abstinence is easier for me now and nocturnal emissions much less likely. So I do now get periods when I can genuinely be myself. But you're right, my life stalled for a long time. In my 20's especially it was a mess, as it currently is for so many of the younger sufferers out there.

opakanopa27 karma

Ever hit yourself with an epi-pen after sex?

2sexy4mybody27 karma

Actually no! On the face of it that sounds like a good plan. But an epi-pen is for type 1 allergic reactions/ anaphylactic shock scenario I think. Ours seems to have a delayed onset (perhaps similar to what docs call type 4 reaction). I don' t think they work for that...

MechanicalCritter25 karma

Can you enjoy sex with a woman while still having the fear and knowledge of what's to follow?

2sexy4mybody71 karma

To be honest there's always the knowledge of what's to come. I've past up the chance of sex knowing that I couldn't afford to be ill for the next week or two. Otherwise the actual act can still be enjoyable once I've resigned myself to the consequences. To be honest i generally avoid sex to avoid the consequences.

Random_Derp_Guy22 karma

First, I am sorry about this condition that you have. It must be extremely difficult to deal with this.

My questions for you would be: * What would be your thoughts of starting a family? I would be curious because you seem to have a firm understanding of your condition. * How would I, a person without POIS, help a person that comes to me and says they have been having these symptoms? * What do you do to keep yourself away from sexual fantasies or thoughts?

2sexy4mybody25 karma

Thanks for taking time to read my post and for your interest... 1. I really want to settle and have a family. I'd love to..But its really hard to progress a relationship. There are actually some POIS sufferers with wife and kids. I think most/all got POIS some time after starting a family. My worry is that I'm nearly 40 and I'm running out of time. I mean my plumbing basically works (!) but I presume I'd get with a girl of a similar age to me and...well the biological clock ticks away. Even if she can have kids I might end up a pretty old dad by the time I get to that stage...if I ever manage it. It seems so far away just now...

  1. I think you can help just by being understanding. Not so much sympathy, just being able to talk matter of factly about it in a non-judgmental way. Showing an interest I suppose. In terms of actual action...well I guess at the moment making a donation to our research grant fund might be the main way at the moment..

  2. Well..I used to really try and suppress sexual thoughts. Not watch a sex scene on tv if it came on, avoiding sexual imagery etc. Tough in a world where sex sells and is everywhere. And believe me I want it as much as the next guy! There's actually some solid research now that shows the more you try not to think about something the more you can't help but think about it. So I tend not to try to suppress thoughts these days. And that's easier now the nocturnal emissions aren't as much of a problem as I used to be worried of increasing their likelihood by exposing myself to sexual stuff...

[deleted]18 karma

This sounds like fucking hell. I am sorry for you bro.

2sexy4mybody22 karma

a good concise description! Thanks for dropping by man

[deleted]14 karma

You know what. My poor ass wants to donate. I'm coming back for the link.

2sexy4mybody21 karma

Your ass is amazing. Thanks a load if you donate.

234i23irju2jethroway17 karma

I'm not a doctor, but I do have some experience in biology. I'm wondering- FOR SCIENCE - has the doctor who diagnosed you tried taking a sample of the irritating substance (namely, your ejaculate), centrifuging it to separate the components, and doing a skin allergy test to isolate the material that is causing it? Maybe that can help in some way. Best of luck to ya, Anonymous.

2sexy4mybody11 karma

Quite a few of us have had skin allergy tests with ejaculate but not yet seperated individual components of ejaculate. That's the kind of research we need. However its been suggested by some doctors that an allergic reaction to ejaculate in the blood at least could be normal

TSN_Winter16 karma

Why can't chemical castration work?

2sexy4mybody16 karma

Good question. I have't tried it. As far as I know there is some danger of "feminizing effects". I think this would help in terms of not ejaculating in the first place / reducing the urge. It wouldn't solve the problem though could help someone avoid symptoms. In recent years I 've found abstinence is the best way of coping for me, interspersed with non-abstinence, hopefully timed to coincide with my less busy periods of life. The thing is though, we want to find a way to have relationships and a sex life. I don't think chemical castration would do that for us. But its a good point, thanks.

spacecase8912 karma

Could you just get you seminal vesicle removed?

2sexy4mybody11 karma

If I am allergic to a component of semen and if that component is secreted by the seminal vesicles then maybe it would work. But there's no way of knowing at this stage and personally I'd like better odds before going that route. Thanks

ehstone812 karma

have you considered storing sperm so that you could start a family if you so choose without releasing your symptoms?

2sexy4mybody9 karma

Yeah, that's exactly what the guy who got castrated did. He took that action before we had a real chance of a research programme. Now that we have that chance, I'd like to hold out a bit longer..Also, as mentioned in the post it took the guy years to convince doctors to carry out the surgery and had to go overseas to do it.

fmlfmlfml1011 karma

This may be a dumb question, but can't guys enjoy stimulation and stop before completion? Since the "completion" portion of it may be what actually is causing your body to attack itself? I just think that may help with your relationship issue, you can just do what us girls do during sex (most of the time since orgasms for women can be difficult to achieve) and enjoy the sensation w/o orgasm!

2sexy4mybody23 karma

Maybe its just me but I'd say its hit and miss! In an ideal world maybe yes. The thing is though, long stimulation gives some precum, for me anyway, so even if I avoid the whole shebang (please excuse the pun) I still get some, all be it milder, symptoms.

0samura110 karma

Fucking good on you for pushing through.The fact that you're spreading awareness contributing directly to try and solve your problem haven't given up and most importantly still have a sense of humor about it all is more than admirable. I don't have a credit card at the moment but I'll use some one else's and get some money towards the cause. (I'll reimburse them of course) Keep on keeping on man best of luck to you.

2sexy4mybody10 karma

Thats awesome man, good of you to take time to post. Thanks a lot. (And thank your friend too!)

[deleted]8 karma


2sexy4mybody21 karma

I used to get nocturnal ejaculations a lot and they caused me quite a bit of anxiety. The timing of them was so unpredicatble so I never knew when I was going to be ill and so often it would ruin stuff I had planned and it had a big impact on my work. It was really frustrating, I couldn't believe my body would hijack itself like that - especially when coming up to occasions I was really looking forward to.

2sexy4mybody12 karma

In terms of the surgery (I assume you mean castration like the one guy had), I don't think I could do that. I'm hopeful we can find a better solution. I'd rather figure out what this thing is and treat it accordingly. That's why we need a research programme. It was a leap of faith by that guy to have the castration. It gave him his life back but wow...actually I think he's amazing for doing what he did.

barte927 karma

I heard somewhere (not on reddit believe it or not!) that stuff that goes on your glans can get absorbed into your blood stream really fast. Maybe this could be the problem, that some of the semen is actually getting into your bloodstream and having an effect? Not a doctor, and not sure if it is 100% true, but worth checking it out!

2sexy4mybody11 karma

Yeah, smart idea. Actually its a theory we also came up with on our forums. Somewhere in the plumbing there could be a gap where semen or something could come into contact with the blood and cause a reaction.

bbitmaster7 karma

Have you considered that it could be a neural chemical thing? It is widely known that after ejaculation a large amount of prolactin is released. Prolactin is known to kill dopamine and it's the reason men lose desire after sex. It's not unusual for men to feel lethargic afterwards for a few hours to a few days - perhaps your body is overreacting or has something screwed up related to prolactin or some other chemical.

There's several pharmaceuticals known to block prolactin release, have you considered this (look up cabergoline/dostinex specifically - there are others)?

I've read in some forums some men experimenting with cabergoline recreationaly claiming it completely eliminated there refactory period and they were able to orgasm over and over again. It sounded like quite a drug.

Anyway it's just a thought, and probably something worth trying. Best of luck to you!

2sexy4mybody6 karma

Thanks. Definitely we've looked at this and as far as I'm concerned a neuro-endocrine explanation could still be correct. Prolactin and dopamine have both been much discussed on our original forum (which has been going since 2007). Some members have tried bromocriptine but I'm not sure about cabergoline. Thanks

beyondtherapy7 karma

Are you aware of any cases of people getting vasectomy and not a castration, if so, how well did it help?

2sexy4mybody10 karma

Yeah not that well... And interestingly, there are one or two guys who developed POIS only after they had vasectomies reversed. Which should tell us something I guess..

MyWifesBusty4 karma

Jesus that's awful.

About once a year, usually in the spring, I get a period of about 3 weeks where I get intense headaches that last for about 12 hours after I orgasm. I got a full checkout and it turns out that it's just a thing that a fairly significant number of people get, it's temporary, and you can usually keep it in check with some prophylactic headache medicine.

I can't imagine having that be a permanent state of being. Man.

2sexy4mybody12 karma

Yeah post-coital headaches I think they're called. I'm not sure POIS is related. You might find this of interest (I tried norethisterone - didn't work for me)