Hello all

[Vatisloff]

Hi everyone,

I've been a longtime lurker but have never posted until now.
For me this post is long overdue especially considering that I had a previous account that seemingly lapsed due to inactivity.

I need to vent my frustration with this condition a bit by saying that it has to be among the worst things to have as it can have such a devastating and far reaching affect on ones life and I at times have fallen prey at times to wishing that I had any other disease or condition even if it were terminal. It's not very helpful to think that way but that's where POIS brings you.
At any rate I've had POIS for 25 years since I was 16 years of age and getting any sort of decent help has been exceedingly difficult and has proved relatively fruitless up until this point. I live in Canada so I'm fortunate enough to live in a country with socialized healthcare which means the standard of care for your common diseases or conditions is relatively good but is woefully inadequate for anything more exotic. I can't speak to whether private health insurance is any better as I can't afford it but one hopes. It's not an easy row to hoe for any of us in finding the help we need and after reading about others struggles on this board to do so I can completely empathize.
My POIS symptoms are largely cognitive with brain fog and focus and memory issues featuring prominently. By my nature I'm an insular person who doesn't readily seek out the company of others but going through POIS exacerbates that tendency to avoid social situations and people in general. I have major depression and anxiety, with the anxiety feeding and perpetuating this infernal POIS cycle. So it's fare to say that I feel that I don't have too much control over my condition and that quite frequently I use masturbation as way to cope with my anxiety and the anxiety is in large part about masturbation, I haven't found reliable way of dealing with anxiety that makes me feel as though I can deal with it effectively and move on with my day once it reaches a certain threshold. At times it feels like it just builds and builds until I reach a point where I can't take it anymore. I've tried various treatments, many gleaned from this board, mostly involving supplementation and diet.
My memory being what it is I can't catalogue all of them now but I can say that I've used the supplements that many swear by such as niacin and fenugreek as well as saw palmetto and B complex supplementation. There have been times where I've felt both niacin and fenugreek have helped but it has seemed inconsistent, B complex has proven to raise my anxiety, but I attribute that to it being the common cheaply manufactured forms of the vitamins.

There is no doubt more to say but I've reached a point where I feel my mental energy is a little taxed so I'll just end my first post by saying that I admire many of you guys and I expect I will have much more to contribute as time goes on.


-Vati

[Quantum]

Hi Vatisloff, and thanks for having taken the time to register, and for contributing to the forum.  I hope more and more of the "silent lurkers" will join and share their experience, their questions, their frustration, their success, or anything related to their life with POIS.  IT is so important ofr us all to be in contact with others who have to live with the same ailment.   We can, finally, talk with others who truly understand our situation.  And it is also a place to vent, from time to time, and be understood about why we need to vent!

Even if medicine is not as good as you would like in Canada, It would not be better anywhere in the world right now, because POIS is not known, its causes are not known, its pathopysiology is not known, and because of that, no physician or specialist have anything to offer as a treatment.   There is a handful of specialist who know about POIS, and they are still in the "observation mode", except, maybe, dr Waldinger, who is currently searching for an antigen in the prostate fluid, in line with his view of POIS as an auto-immune disorder.

We hope soon another team will start another POIS research, with the money of our grant, through NORD.

I hope you will find some safe and effective alternatives for your POIS symptoms in what is presented on the forum by other members.

[Vatisloff]

Thank you for the greeting Quantum, it is my hope as well that my fellow silent lurkers make the transition to posting publicly, the value of having a good support network can not be underestimated and I can attest to the fact that keeping myself sequestered such as I have for so long has not done me much good. It's a lesson I've had to learn and re-learn many a time and it certainly can be hard habit to break.

I'm in wholehearted agreement that there is little treatment available from any physician or specialist and most of what is on offer is based on theory and conjecture, it's been my experience however that even getting ones foot in the door to even see a specialist is exceptionally difficult and have thus far not have had any luck in doing so as all have refused to see me. I could bemoan the fact that there seems to be too little intellectual curiosity out there from those who's help I've sought but IMO I think it boils down to a matter of not having the funds to afford private health care and having GP's that are inherently hamstringed by the shortsighted and underfunded government system. Discussions of adequacy and level of health care aside what I'm most keen on is finding specialists that I can work with. I don't know if there is anyone out there that have any leads to finding medical help in Canada but I hope I can solicit my fellow POIS suffers that might happen to read this post to get into contact with me or reply to this post if you think you can provide any assistance. Any and all help is appreciated.

I'll of course do my own searching and probably make another post about the subject but I'm always open to new information.

Thanks again Quantum for the welcome I'm hopeful as well that I can find effective alternative treatments.


-Vati

[demografx]

Welcome, Vati!