Hi Animus,
First of all thank you so much for sharing some of your time with us.
I saw your YouTube video. And some of the symptoms you are refering there remember me totally the same I am having since some time ago (but not since I began with POIS). Also, some other things you are telling now.... Like for instance, the onset time was not always the same for you....was exactly the same for me during my first years of POIS. I also suffered during 4 years or so, to being able to realize that maybe my Illness was POIS. Just because the onset time was different every time (especially in the early years). I also had to visit psychiatrist since no doctor found anything strange in the blood tests and I felt the terrible sensation of
incomprehension since nobody was able to help me.... One of the symptoms what most strikes me (from what you explained on your video) is the pain in the joints of the spinal cord. Because since some months I am also suffering them.
Human body is extremly complex, very probably more than POIS is. I think that we are all in agreement on that.
On October 2017, I had only 3 days after an O a a pericarditis... In the hospital where I was treated, they explained to me that a pericarditis is either caused by an infection or an autoimmune disease. They did me a lot of tests to find any infection. None was found.
A few days ago I had pain in the chest again, with the same pain that I ended up having pericarditis.
The cardiologist that I saw a week ago has explained to me that autoimmune diseases tend to affect serous inflammation. Because the serous tissues have much more presence of cells of the immune system than other tissues in the body. Examples of serous tissues are the pericardium, the peritoneum, the pleura (lungs). And this cardiologist told me that this chest pain I feel is very likely due to pleuritis....and this could extend to pericardium if not treated correctly. I also think that this pleural inflammation could be one of the reasons of feeling so strong palpitations also... Since lungs and heart are strongly related.
I strongly agree with Quantum when he says about there are different types of POIS. And that symptoms and remedies are not the same for all of us.
Curiously we have two types of immune systems one generic (and innate) and another adaptive (that is able to 'learn' and create new antibodies by means of some mechanism. That's why vaccines work and our adaptive immune system is able to overcome by itself some types of viruses infections...).
I have been abstinent since August 4th (9 months now). The first thing one might think is how is that possible? ... that is not POIS! Right?.... Well, as I said, POIS does not seems to manifest and work exactly the same for all of us. In my case, one year ago by accident (I mean without being intentional) I putted more pressure due in my testicular and perineal area when I was riding on a sled. There was no strong blow or bruise at all. I only had a varicocele in the testicles. that curiously I never had and they appeared when I started to suffer POIS. This varicocele (varicose veins in testicles) was one of POIS symptoms. In fact, when I was POIS free, this varicocele diminished or even disappeared altogether. And viceversa, when POIS was activated It became much more bigger.....
This riding on sled day... In a concrete moment I felt a strong prick (on the varicocele zone) like a kind of whiplash. For some strange reason from that day each time I putted some pressure on testicles or perineal area (just by sitting). POIS symptoms are triggered!!! Just by putting some pressure! I know it sounds amazing!.... But I know what my POIS symptoms where before that day.... And they were the same!
Moreover, since that day the problem was only for the testicular and perineal area when putting pressure.... nothing else was sensible to pressure.... since then I had to avoid sitting...Oddly enough!
But that is not all.... being in that difficult situation ... I had the last O I had (on last August 4th). After that last O..... Things became even worse.... The sensible area to pressure spreaded even more.... Now affecting also buttocks and lower back....
And even more.... after August 4th, I have not had an O anymore. But I had arousal moments.... And preseminal liquid (generated on cowper glands) made me also having worsening and as well burning/stinging sensation in every place precum liquid was in touch with (urethra and glans skin....). For me, with no doubt all these things are POIS related. Even if this is not exactly the same for all of us.
As Quantum says.... Many different types of POIS?
The adaptive immune system can work or attack (by mistake) something different from each one of us?
Who knows....
Animus.... Anyway, I'm very happy for you ... and that you have managed to get out of this horrible disease! and that you have also managed to get well from such a delicate surgery!
Like Demo says... You are our Hero!!!
And I sincerely hope that our research team will free us or bring us a little closer to the solution of this nightmare...
Sorry for extend myself so much.... But I wanted also to provide a bit of my vision of POIS....
Hi Fernab!
It's a pleasure to meet you, and every one else on this forum too. I'm sorry if I didn't address the auto-immune theory with the due respect it deserves!... but you're right. And I also agree very much with Quantum that POIS varies in symptoms, etc. from person to person. That there could be different classes of the disease. I have a lot to learn as well regarding POIS.
As far as explaining the logic to my theory, Hopeoneday, I feel like the logic is laid out as well as I can.. but perhaps someone else can explain it to you better than I.
Fernab- I was very affected to hear that your symptoms were a lot like mine, regarding the Spinal Column, and the pain in the Testes. I hope you feel better, and congrats on staying abstinent for so long. That's an incredible accomplishment.
There is much to respond to in your post... But I want to focus on the variety of symptoms, and the variety of Diagnoses that we hear regarding the POIS, what causes it, and so forth.
I think it is important to state that often times a Chronic Illness, with repeated episodes over time, takes a great toll on the body. It really will wear you down. Sadly.
POIS will weaken the body, and can cause a lot of other maladies. I know when I went in for countless tests and saw countless doctors. The longer I had POIS, the more things started to go "wrong" in my body, to be honest.
The base POIS symptoms were always the same after sex. But progressively, I began to have many many other maladies too... which seemed to get worse over time.
I started losing my balance.
My eyesight started to worsen.
I would get colds and flues much more easily.
My digestion was very irregular, and poor.
My spine was in terrible pain.
I was getting depression.
My blood pressure went up, and heart became weaker.
I would start to sweat profusely when exercising.
There was just a lot of things... just to name a few.
And I think, each symptom on their own, can be diagnosed, and declared it's own problem... independently of what the "Root Cause" if you will, was.
So I agree with you fully! that the body is a complicated machine, haha. And it can be giving us some puzzling clues. Yes, I was actually admitted to a Mental Hospital, because my Doctor thought I was seriously Delusional, and imagining Symptoms, and problems that I didn't have. I spent 3 months at a psychiatric ward talking to Doctors who thought I was crazy. So-- you know, going through this was a tough experience, and I became rather dogged in my particular understanding and theory of the problem. Because there was so much doubt being thrown my way.
I would like to come back to a main point I made a couple times in the above thread: that I think POIS can be seen as an incident of Trauma, or Shock to the body.
When the body goes through a trauma, usually the weakest parts begin to fail. Which could possibly explain the wide variety and Diagnoses that people with the Disease have. But I think it's important to focus on the Common Shared Symptoms that define the disease for us all. I personally, don't think I had any immunity problems, other than being more susceptible to colds, flues. Perhaps other people had more serious immune issues as a result of the POIS.
