Sorry, I meant . Komisaruk. Regardless, the fact that you're only responding my post to that little tidbit and not to the general subject of my critiquing is a sign that you know I'm right. We're not going to be alive when this thing gets formally treated, or perhaps, we will be but many of us will simply be too old to bother with it. I would bet all of my life savings that this won't be formally treated until past the 2050's decade, and that's being generous given it's been already 14 years and doctors still - for whatever bizarre reason - don't know about it, even behind the desk let alone behind the doctor's office. You're all great and intelligent people here, no doubt, but you need to be realistic about this. I don't want to discuss this on a forum. I want to discuss this in an actual doctor's office with actual M.D's and not Laymen. If Laymen have more exciting theories and conjure more ad hoc knowledge on a condition than actual doctors after 14 years...you know something is terribly, terribly wrong.
Hi Pentrazemine,
I take your point but perhaps I can try and share something positive in reflection of reading some of your post. Me personally I am going through a very difficult time with POIS at the moment and can't handle the stress at work. It is so tough. Anyhow perhaps there is a positive way to look at this. There has only been a couple of completed POIS studies from Waldinger. I don't think we can count Dr Dexters and also Goldmeiers as they are shallow insights and only observational. Waldinger's first one was fruitless as well really and only observational. However in my limited opinion his papers of desensitisation is a break through, although only useful for people who have a POIS type which is related to IgE immune response. So we actually have quite a high progress rate (50% = one step forward).
The problem with many conditions is being able to catch when something is going wrong until it is too late as they don't know the trigger is. For POIS we can trigger this condition whenever we choose. So this is great in terms of finding a comparable state. Some medical conditions are happening all the time and whats causing it can be thus harder to find in some ways. For example, we have thousands of IgG markers in our bodies and some people do not have any health problems with them but other people do.
As I have recently mentioned and believed for a long time that the O in POIS in incorrect and it should be called SIS (Semen Illness Syndrome)! Why? Because I know I can trigger POIS without shooting and thus I strongly believe orgasm is not the cause.
When I take an ACH blocker (Mytelase or mestinon) it can stimulate semen production, especially if I take in the morning (so I don't that anymore). There is absolutely no sexual arousal is this case. The strange thing is that the only time I have ever been what I believe to experience no POIS was when taking Mytelase. So it a double edged sword. But surely this discovery is meaningful. To me it is clear that ACh reduction is one of the biggest causes of POIS symptoms (well at least my type of POIS). I was a little bit disappointed that neither Dr K or Waldinger confirmed receipt of my mail explaining this discovery.
We know there was an individual who went to great lengths to have parts removed from his body to try to stop POIS. I do know from speaking with him not too long ago that it didn't work, despite the the youtube video which paints a totally different story. Well at least we know that it's not worth doing what he did, especially the removal of his testes! So why do I mention this? Because after having all that surgery he still got POIS. I do know that the procedure that he had done to remove the prostate was called a TURP. This does not remove the prostate fully. It cuts/burns sections of it away. What this means is that the prostate will grow back and also if any not removed it could still produce fluid. I know my my Mytelase experience that it only takes the tiniest bit of semen to trigger POIS. The first day is not the same as if having full sex but it still escalates to the same point soon after a day or two.
So if the antigen is in the prostate fluid then the only way (not absolute) to potentially stop the cause would be to have the prostate completely removed. THIS IS AN EXTREMELY SERIOUS OPERATION. In the not so distant past it was known to be when you had prostate cancer that the cure (the operation) was worse than the disease. Sexual function gone due to unknown nerves being cut and incontinence. The good news is that it has come a long way in the last ten years or so. There is a doctor in the US who developed a new technical and innovative procedure and is having amazing results. The procedure is called "laparoscopic nerve sparing radical prostatectomy". I saw on internet that some guy ran marathon 6 months after having this operation!
So are you going to be able to get this done now. NO. Why? Because no-one can prove scientifically that POIS exists. Thus no way to separate the genuine from the crazy or desperate (I'm all these categories at the moment). I would be surprised if Dr K can't prove that POIS exists. He has already indicated that there are changes in heart rate variability. There is also Waldinger's recent study which I would have thought would be finished by now:
http://poiscenter.com/forums/index.php?topic=2099.msg19041#msg19041
If either proves that the antigen is in the prostate then that would be another breakthrough.
So, best case scenario; both Dr K and Waldinger prove that POIS exists. Waldinger could any time cos no-one knows what the hell he is doing. Dr K could prove PIOS exists by March 2017. My logic here is that study is completed by end of September as planned then needs to peer reviewed. Thats' just ten months away.
For me if we can get to this point with just one of them with the medical proof then I would use this to try and get the "laparoscopic nerve sparing radical prostatectomy". I want this done even if there was a chance that it would not stop POIS. Why? Because I know from researching that having this operation would prevent the strong sexual urge which comes from the prostate getting very full. Sex is apparently less satisfying in a sense but still can be enjoyable (for a normal person). One of the problems I have is that cardio exercise fills up my prostate so I don't do any. At least if I had this op then I could go running and not feel uncontrollably frustrated a few hours afterwards.
I hope this all doesn't seem to extreme. I have had severe POIS for 27 years now.
Oh, yes and one last things; perhaps the tVNS nerve stimulator can provide considerable relief! Getting the damn thing could be the next challenge though.
FB
It's funny you should mention changing the name from POIS to SIS - I was actually in thoughts of maybe changing it to Post Orgasmic Illness Spectrum, and not even Syndrome; many people's Etiologies are simply diverse and different, and like you said, the 'trigger' is the same but the mechanisms are versatile and vary in nature. Some people need X drug while others need Y drug, while another person needs Z and Y, etc. And like your opinion, I also don't believe this 'syndrome' is caused by orgasm - but by the stuff / biochemical synthesis inside the seminal fluid and (or) semen. At least, this goes for OUR particular case. Some people's 'strain' are caused immunologically, some are more inflammatory, some might be neurological, etc.
My POIS is strictly Neurological in terms of Symptoms - not cause. Unlike most people here, I suffer absolutely zero physical symptoms, I have no fatigue. But I suffer from debilitating cognitive / behavioral deficits and my vision gets blurry and photosensitive.
And unlike most people here, my symptoms last entirely for 1 Month and not 1 week. It spontaneously disappears after 1 month. I also get POIS symptoms proportionate to how sick I am. Ie: the severity of my sickness [ie: cold, fever, etc] is proportionate to the severity of my symptoms. The more sick / immune compromised I am - the more I get the symptoms. How often do you see someone with my 'strain' on this forum? You see, being anecdotal, this is also the problem with finding the cause. It's malleable.
Also, I don't know if this is the user you're referring to but a guy named Animus back in 2011 had the TARP removal, cauterized his ejaculatory ducts, had his seminal vesicles removed and he's enjoying / enjoyed 100% free symptoms. So surgically, it's a possible solution but to find a doctor willing to mutilate you to alleviate your suffering is extremely improbable.
Even if POIS were hypothetically 'legitimized' by the 2017 year given the stubbornness of bureaucracy and epistemology transitioning, I doubt doctors will still know much about it unless the big-time Media got involved and (or) some people spent their days throwing POIS Fliers across Hospital lobby's all over their country. I'm surprised no one has done the latter yet.
And given, like you said, the nerve fragility of the nature of the operation I don't think doctors would be too helpful in the mutilation of your nether-regions for an already ambiguous, yet simultaneously, proven condition. Even after 14 years, by doctor's and researchers eyes, this is still too 'new' of a condition to take such risks. I Live in New York City and I've went to maybe 6 Urologists and they've all rejected both my condition and my surgical desires.
So for you, surgery at the point of recognition / legitimacy should still not be on the tables. But consider this a blessing in disguise for alternative treatments that they can use w/o bodily mutilation.
Whoever can synthesize a drug that can destroy / eradicate seminal fluid production wins my heart...because for some of us a drug like that could be our golden ticket.
It's also equally mind boggling that researchers can't just set up grand openings for POIS sufferers all across the country and pool as much as they can and emulate the expositions of their illnesses seen here on this forum. Like I said, by the way research is going and how little doctors still don't know about, I'm still placing my money that this is something that won't be cured until the later-half of the century. The etiology quantification is too spread out / diversified amongst researchers..there's no over-arching organization, there's no proper, formalized Epistemology. This is more proto-science than an actual science.
at least the sufferers who are kids in their Teens to 20's have a chance of a cure by the time they reach my age - mid 40's. lulz.
