Should I tell my parents about POIS?

[IWontGiveUp]

I'm 17 and have been suffering from POIS for around 2.5 years now. It ruined my highschool experience and grades.

Lately my school performance has been the worst it's ever been and because of that my parents are on my ass ( I dont blame them since this last year is very important).

Now I am really considering telling them about it but I don't know if I should and how to go about it...

Up until now I've only told them about my fatigue problems and they took me to take bloods and they came back fine, Ive been to acupuncture aswell but didnt help.

I'm worried they are going to write it off as an excuse for my bad grades or not even believe me since it's such a rare/unknown disease.

But on the other hand if it goes well I could show them the forum and they could help me buy some of the supplements that are supposed to help maybe. Also it would explain why I look like a drug addict while in POIS hahah.

What do you guys think?

[Muon]

I think you should tell them. Let them read this paper first for a better understanding https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5001999/
When they show interest after reading this article you may let them know about the forum.

[certainlypois2]

I think you should tell them. Let them read this paper first for a better understanding https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5001999/
When they show interest after reading this article you may let them know about the forum.

And if they are still skeptical, there are about 6 more papers about patients from around the world you can show them. There also two videos you can show them( one done by TLC in the us and the other by an Australian channel)
You can find links to those papers in the books,articles and references section on the main page.

[Muon]

Have you already told them?

[IWontGiveUp]

Have you already told them?

No, I will post an update if I tell them.

[Journey]

Have you already told them?

No, I will post an update if I tell them.

Update

[BoneBroth]

At that age, when I started to experience POIS, I pretty soon understood that it was triggered by orgasm but I was too shy to bring up sexual issues to my parents so kept it only about the symptoms (hot flashes, zits etc). They didn't have to be doctors or rocket scientist to see that I was in agony, but I guess they "diagnosed" me as somewhat lazy or ambitionless. That was tough. Parents should be like Sherlock Holmes when it comes to their kids health and not smooth over such things.

Years and decades passed and just by exhaustion I finally got into the details with my dad (and a family related doctor). The outcome? Unfortunatly zero understanding but very needful echomonical support. The understanding came from my own research and handpicked therapists.

Tell your parents and see what happens! Just explain the symptoms if you like and reference to others in this group. Maybe you should have some other POISer here to talk with your parents in the phone to explain the seriousity of this. They need to know the seriousity, to hear about what it can lead to later in life. It's very hard to "preach in your own town". You might try to convince your family or girlfriend something 1 000 times, but when they hear the exacly same words from an outsider (specificallly someone qualified) they just need to hear it once to believe it... sooooo frustrating...

One thing I learned is; when it comes to your personal health issues (or probably everything in life) there is noone else resposible than yourself. Noone else out there will ride in like a knight in your life and fix all your problems. Usually, to get the wheel starts spinning, you have to get down to it and get the job done yourself! My best advice is: Become your own amateur health detective and try to find new little pieces of the puzzle every day. Many in this forum has found ways to controll their POIS to 90%! Start organize POIS-information and what people to contact. If one therapist or doctor fails to help you, get another, and another, and another... Giving up is simply just not an option. The one who sais "I've tryed it all", hasn't in fact tryed much at all.

Oh, I see now that this post was from a year ago, well if not the author than maybe someone else would benefit. It's an important question.

[peiguy]

My POIS started as a teenager.  After two years, I told my Mom when I was 15.  She made an appointment with our family doctor.

With my doctor, I told him everything.  He suggested abstinence - and prescribed some medication which would make it a bit easier to resist the urge to self-pleasure.  After several weeks I had a wet dream.  Interestingly I seemed to have no issues.  My doctor said that upon waking briefly from sleep, fatigue and nausea would likely just let me fall back to sleep and I'd be fine in the morning.  The key was to wear a couple pairs of briefs under my PJs to avoid having to change in the night.

[Journey]

My POIS started as a teenager.  After two years, I told my Mom when I was 15.  She made an appointment with our family doctor.

With my doctor, I told him everything.  He suggested abstinence - and prescribed some medication which would make it a bit easier to resist the urge to self-pleasure.  After several weeks I had a wet dream.  Interestingly I seemed to have no issues.  My doctor said that upon waking briefly from sleep, fatigue and nausea would likely just let me fall back to sleep and I'd be fine in the morning.  The key was to wear a couple pairs of briefs under my PJs to avoid having to change in the night.

Do those medicines impact androgens, it might stunt your growth if they lower Testosterone or DHT or Dopamine and rise Prolactin. Your family doctor didn't even think of what might be root cause and how to fix it? Did you tell him about researches showing it might be autoimmune or such?

[peiguy]

Just so you know, that was over 40 years ago.

The medication was a mix of pseudoephedrine and Benadryl.  All it really did was prevent erections and made my penis very small.  That discouraged masturbation.

[Journey]

Just so you know, that was over 40 years ago.

The medication was a mix of pseudoephedrine and Benadryl.  All it really did was prevent erections and made my penis very small.  That discouraged masturbation.

So you already had POIS 40 ish years ago and you still have it??

And back then doctors had 0 clue other than to prescribe something to inhibit the libido?

How haven't you developed some severe mental illness from having POIS so long?

I had some hope when first discovering about POIS but lately I am turning more psychotic realizing that I am at my peak in 20s and I have this dumb (possibly inflammation related disorder - thus the high morning cortisol levels to blunt the inflammation) disorder

[Warrior]

At that age, when I started to experience POIS, I pretty soon understood that it was triggered by orgasm but I was too shy to bring up sexual issues to my parents so kept it only about the symptoms (hot flashes, zits etc). They didn't have to be doctors or rocket scientist to see that I was in agony, but I guess they "diagnosed" me as somewhat lazy or ambitionless. That was tough. Parents should be like Sherlock Holmes when it comes to their kids health and not smooth over such things.

Years and decades passed and just by exhaustion I finally got into the details with my dad (and a family related doctor). The outcome? Unfortunatly zero understanding but very needful echomonical support. The understanding came from my own research and handpicked therapists.

Tell your parents and see what happens! Just explain the symptoms if you like and reference to others in this group. Maybe you should have some other POISer here to talk with your parents in the phone to explain the seriousity of this. They need to know the seriousity, to hear about what it can lead to later in life. It's very hard to "preach in your own town". You might try to convince your family or girlfriend something 1 000 times, but when they hear the exacly same words from an outsider (specificallly someone qualified) they just need to hear it once to believe it... sooooo frustrating...

One thing I learned is; when it comes to your personal health issues (or probably everything in life) there is noone else resposible than yourself. Noone else out there will ride in like a knight in your life and fix all your problems. Usually, to get the wheel starts spinning, you have to get down to it and get the job done yourself! My best advice is: Become your own amateur health detective and try to find new little pieces of the puzzle every day. Many in this forum has found ways to controll their POIS to 90%! Start organize POIS-information and what people to contact. If one therapist or doctor fails to help you, get another, and another, and another... Giving up is simply just not an option. The one who sais "I've tryed it all", hasn't in fact tryed much at all.

Oh, I see now that this post was from a year ago, well if not the author than maybe someone else would benefit. It's an important question.

I know this is an old post but just wanted to make the comment that this is extremely relatable and very good advice.

My POIS began when I was around 17, and I only had the courage to tell my parents when I was 21 (thank fully I did!). I suffered in silence for a long time. My parents, particularly my dad, are relatively traditional, so he isn't very good at having intimate conversations especially about "private parts". He tends to shy away from those topics. I was never given any talk when I was younger about sex, how your own penis works, etc figured it out all on my own. When I told them, they were relatively understanding, more so my own mother, but the emotional support was pretty non-existent. However, their overall economic support (I'm still living with them) has been incredibly helpful and I don't think I would have made the progress on understanding my POIS to the extent that I have without their economic support. I did see a POIS specialist and told my parents that if they have any questions or things they are unsure about in regards to POIS, they can call up the specialist (the specialist offered his number if my parents did not understand the illness.) Another added benefit of telling your parents is the simple fact that you are expressing the truth to those around you. There's a book called "Radical Honesty" by Brad Blanton, where he goes on to say that whenever you share the truth about your feelings, thoughts, etc to those around you, it allows you to drop the weight of a "self-image" that you carry on your shoulders. It makes you feel lighter, clearer, and more free. If they don't believe or understand you, at least you know you told the truth.

I want to echo the idea BoneBroth said. Whenever you have a health issue, it is your responsibility to figure it out. No one is going to save you. No angel is going to come down and offer out their hand in support. You can't wait around for your parents or siblings to understand you. You need to take full ownership over the situation and get to work. That's the only way things get done. This is a good lesson for life in general. Good book on this idea is "Extreme Ownership" by Jocko Willink (a bit cliche but super important lesson)

If you want someone to talk to, thats what a therapist/psychologist/counsellor is for. You can't really expect your parents or close relatives to offer emotional support, they haven't really been trained in how to do so lmao.

[demografx]

Just so you know, that was over 40 years ago…

So you already had POIS 40 ish years ago and you still have it??…

POIS 40++ years ago for me

[peiguy]

I still have it.  Long ago I learned how to accommodate it.  its not fun, but I got used to it.  Few years ago discussed with my doctor - she said I did all that I could back then as the syndrome has only been identified more recently. 

In my case - avoiding ejaculation avoids the problem.  Its tough to separate orgasm and ejaculation - but possible.  easy on Rapaflo - for me.

Married a woman with very low libido - worked out well for me.  When we did have sex - other than reproductive sex - I did coitus resrvatus.

For baby making I felt sick after each attempt.  Gravol helped some.  Modern day ginger Gravol is as helpful and without the awful side effects.

You cannot compare today's medical knowledge with 40 years ago.  Be positive.  This will not be easy, but you can overcome.

So you already had POIS 40 ish years ago and you still have it??

And back then doctors had 0 clue other than to prescribe something to inhibit the libido?

How haven't you developed some severe mental illness from having POIS so long?

I had some hope when first discovering about POIS but lately I am turning more psychotic realizing that I am at my peak in 20s and I have this dumb (possibly inflammation related disorder - thus the high morning cortisol levels to blunt the inflammation) disorder
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