Newbie here and I have no idea what to do.

[ConfusedGuy]

Hi everyone,

So I'm pretty sure after almost 18 years of symptoms I have P.O.I.S.  I'm relieved in sorts but also kind of confused.  Years and years of blood tests, MRIs, half interested doctors, a psychologist diagnosing me with a type somatoform disorder (i.e. I'm nuts, it's all in my head).

What do I do now?  I don't know how to approach my family doctor about this.  She is very supportive, but I don't want to approach her until I have some credible literature and studies on this.  I tried emailing Dr. Waldinger last week, but have yet to get a reply.

I have all the symptoms generally described, except for 2 that seem to be absent from the list.  1.  My symptoms never go away completely.  If I orgasm, they get worse and get slightly better after a few days, but they never really "disappear".  2. I seem to have paresthesia in certain areas of my body that is persistent, including my armpits and groin area.

[Daveman]

Hi everyone,

So I'm pretty sure after almost 18 years of symptoms I have P.O.I.S.  I'm relieved in sorts but also kind of confused.  Years and years of blood tests, MRIs, half interested doctors, a psychologist diagnosing me with a type somatoform disorder (i.e. I'm nuts, it's all in my head).

What do I do now?  I don't know how to approach my family doctor about this.  She is very supportive, but I don't want to approach her until I have some credible literature and studies on this.  I tried emailing Dr. Waldinger last week, but have yet to get a reply.

I have all the symptoms generally described, except for 2 that seem to be absent from the list.  1.  My symptoms never go away completely.  If I orgasm, they get worse and get slightly better after a few days, but they never really "disappear".  2. I seem to have paresthesia in certain areas of my body that is persistent, including my armpits and groin area.

Hey Confused Guy,

Welcome to the club!!

Psychologists love this disorder, it's something they can treat for years without anybody "professional" saying anything! Localized paresthesia but (s)he just ignores that or finds some fancy formula to blame the mind for it!!

Our biggest problem is with the doctors. This is why we have focused so seriously on professional research. Our goal is that at some point, we can go to a doctor and say, "I have POIS". They say, "Oh yes, I know about that,here's what we'll do..!"

So far there's really nothing entirely credible to be offered. At best there are several treatments that can be of help for relieving symptoms in the meantime. Search (upper left corner) for things like "fenugreek, fish oil, garlic, vitamins, niacin, testosterone, even viagra". What out for certain others.

For more than 6 yrs the forums have been discussing possibilities, and some of them are pretty wild. Again, a big reason for going for the professional route.

I'm not sure why there are so many that insist that they can "do it themselves". Even if they found a "cure" they'd never have the support of the medical profession behind them.

[Daveman]

BTW, that reminds me.

I just came through a POIS session of about 7-8 days. Didn't get the flush after the niacin, and was impatient..... bad move.

Anyways,  Something dawned on me as I was urinating recently. It was very evident that something was different "down there". Everything was loose and natural. After POIS, it all gets swollen and semi-hard, not the member as such, but the rest of the "package". This lasts until a day or two after the POIS has gone away.

This is the first time it really dawned on me the difference was quite evident, and I realized that the POIS had also ended.

Certainly not a mental condition!!

[Colm]

Hi everyone,

So I'm pretty sure after almost 18 years of symptoms I have P.O.I.S.  I'm relieved in sorts but also kind of confused.  Years and years of blood tests, MRIs, half interested doctors, a psychologist diagnosing me with a type somatoform disorder (i.e. I'm nuts, it's all in my head).

What do I do now?  I don't know how to approach my family doctor about this.  She is very supportive, but I don't want to approach her until I have some credible literature and studies on this.  I tried emailing Dr. Waldinger last week, but have yet to get a reply.

I have all the symptoms generally described, except for 2 that seem to be absent from the list.  1.  My symptoms never go away completely.  If I orgasm, they get worse and get slightly better after a few days, but they never really "disappear".  2. I seem to have paresthesia in certain areas of my body that is persistent, including my armpits and groin area.

I hear what you are saying, and like most here share the frustration of trying to live life with some energy, through this thing.

I'm fairly new on the board, and still enthusiastic to read other experiences.

My googling skills are sadly lacking as I never knew this was called POIS or heard of Dr. Waldinger until a few months back.

On your "approaching the family Doc", I would think it'd be better when armed with Validity, otherwise I think GP's are too busy to really research or understand, and it's too easy for them to put it into the "all in the mind category".

On the symptoms never going away, when this started within me, quite some time back, I would look forward to a week beyond O, when all symptoms would clear and I would feel well. Over the years, while they recede beyond 3 days, and I can go a month without O, they never clear fully.

If this was all in the mind, there would not be a collective experience of the symptoms receding after 3-5 days.

At the moment, it seems like 2014 "MAY" be a good year for us all, as a roadmap to treating the root cause and validated treatments will hopefully start, thanks to all of the good folks here who brought the research forward.