Just read this on reddit and it reminded me of this thread... sounds like it could have some similarities..
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 beginningOver 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. [BRAINFOG?]
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:https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3
(Please select 'Post-Orgasmic Illness Syndrome' from the drop-down list under "research fund")
You can read more about the NORD grant program here: http://www.rarediseases.org/medical-professionals/research-grants/policy
Visit our forums are here: http://www.thenakedscientists.com/forum/index.php?topic=6576.0
and here: http://www.poiscenter.com/forums/index.php
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.
It seems like they are taking an approach as they are allergic or having some kind of auto immune reaction to semen. I would have to investigate this more...