Hi Merlin, and welcome to the poiscenter forum. You will find here support, and useful information.
First, yes, what you have described sounds a lot like POIS. But it seems to me that you may have something else apart from POIS. If some of your symptoms are chronic, even when you are not having any sexual activity for a prolonged period, you may have another underlying, chronic, condition that is worsen a lot by POIS ( assuming that your POIS is not kept active when simply aroused, or when having a bowel movement or even when urinating, each of these situations being mild POIS triggers for a certain number of POIS sufferers ). If you have symptoms in the absence of any POIS trigger, you may then have another condition that is worsen by POIS. For example, in my own case, I have suffered of chronic anxiety since childhood, so I have been anxious even when not active sexually, but POIS had been making my anxiety reach the "out of control" level. So, in addition to developing a method to prevent and control my POIS symptoms, I also had to work on my general anxiety disorder as well ( psychotherapy, yoga, meditation,...).
If you do not feel healthy even when out of POIS, you should talk with your doctor about it. Some other conditions, like depression, or chronic anxiety, or anemia, or CFS, or many others, may have to be diagnosed.
Regarding POIS, do not expect much from your physician. Most of them do not even know about the existence of POIS. It is registered at NORD, the National Organisation for Rare Disorders, so yes, it is quite rare, and not talked about in medicine curriculum nor in medicine textbooks. There is a only a handful of published paper on POIS - some case report and a small study by Dr Waldinger, the doctor who have created the name "POIS" and have suggested some hypothesis about its nature and origin, as well as clinical criteria to define what POIS is ( you can get those papers by contacting Demografx, administrator of the forum, if interested). And, of course, there is the ongoing Rutgers research, that has been founded by the members of this forum.
Thus, so far, the cause or different type of POIS are not identified yet, and there is no known medical treatment ( apart form relief/prevention methods and supplements that members here are sharing about, as, for example, niacin usage). Basically, what your physician can do for you is to rule out any other condition that you may have, like a prostatitis, another type of infection, or else. You can not even expect a POIS diagnostic, as this disease is not known by mainstream medical culture, not even by urologist or neurologist or other specialists. In fact, it seems like just a few specialist in the whole world knows about the existence of POIS, and that's about it. But having your blood tests done is a good idea, and you can have your hormones level checked if you want. They may come out as being in the normal range, or maybe not. At least one member has a total control of his POIS symptoms with testosterone replacement therapy ( Demografx), and there is another case of a member that is relieved by the use of progesterone, If i recall it correctly.
If this medical appointment does not bring anything useful for your POIS, don't be surprised or disheartened. Come back often on this forum, read about what others has found as helpful, and ask any question you may have.
Take care, Merlin.
Quantum
Thanks for the reply, It is quite difficult to completely avoid triggering any kind of pois response, I hadn't even realised a bowel movement can also trigger it but I have noticed that it does sometime do for me.
I'm finding the forum useful and interesting, I have read reports of Trazadone & Mytelase being very effective for some people. I think I will keep reading and make some notes to try and make some sense of it. Sorry this is a bit short but I need to go to bed, there's always too much to do.
Thanks
Merlin
