Could i have POIS?

[Bream]

Hi there, i hope this is the right place for my question, so here it is.

I have been suffering from fatigue and brainfog for over 30 years now. It started when i was about 13, about when i started masturbating.
A typical day for me: i need some coffee to get started and have energy for about 2 hours. I then sink into this hole of brainfog which can last the rest of the day.
If taken enough rest i sometimes get an energy boost after around 22.00 and my head clears up.

If i have an O in the morning or afternoon it feels like i have been hit by a bus, but all discomfort is in my head. I never have flulike symtoms or muscle aches.
An O late at night helps me go to sleep, i dont have any immediate side effects then.

I have seen alot of doctors (regular and alternative) but not much was found.
About 5 years ago i had my testosteron tested, which was low at 6.8 (ref 9-38). After a year of taking andriol (testosterone, 40mg) the level even dropped to 3.8.
When i stopped taking Andriol testosteron went up to 13. My vitamin D level was 18 last year (ref 32 - 86) and some of the B's were low.

I've been reading about POIS since 10 days and went into abstinense right away. The first 3-4 days were as usual, day 5 was a bit worse and day 6 even more. I also felt a bit of glow on my face and my eyes were itching a bit. From day 7 its back to the usual fatigue and brainfog.

So, could this be POIS (i hope it is) and when could i expect some improvement form being abstinent?

Thanks for any insights!

[Daveman]

Sounds like POIS.

POIS cycle times vary anywhere from about 4 days (lucky ones) to 6 wks+. POIS also seems to be somewhat accumulative. If one has several orgasm close to one another, it's like the recuperation time lengthens. If you are just recently trying to abstain to find out how long it takes, it may have accumulated to the point that it will take a fair bit longer to "come out". You  may need to give it 3 to 6 wks!.

As far as testosterone, I asked our testosterone guru, and co-administrator demografx: he answered as follows:

Daveman,

From wikipedia:
http://en.wikipedia.org/wiki/Testosterone_undecanoate


"Experience from [andriol] users indicates that in doses of less than 240 mg per day, effects are negligible, except at the very onset of use, while even in higher doses, effects are still minimal. It is therefore thought that most of the steroid is somehow not making it into the blood stream."

So it might be better to pursue testosterone patches or some other form.

Let's see how your abstention goes. Try to tough it out, since it is a first test, and could take longer than normal.

Welcome, and let's see what we can do to help.

Give a good browse around, and ask or answer questions as you see fit.

[Bream]

Thanks Daveman,

I'll tough it out for several weeks  I've been having O's about every day for the past 34 years (in and out of relations) but i'm single now, which makes is somewhat easier. Could this cold turkey approach also lead to withdrawel effects, next to the POIS symptoms?

In addition to the symptoms i sometimes have what you call 'the chalky stuff' in my urine, but ive only been noticing that the last few years. Two years ago it was so bad that for months it was in every pee (i call it 'dust clouds') and had it tested by my doctor, but they said it wasnt anything to worry about (didnt tell me what it was).
Last year i had 2 UTI's for the first time in my life. Another possible POIS related thing is i've been having tremendous sharp pains in my prostate in the middle of the night, but only a couple of times a year. The pain lasts about half an hour, it started when i was about 30.  I have not experienced these pains for 2 years now however.  

Anyway, yesterday i bought some fenugreek, garlic and spinach and ordered Relora. I'll experiment carefully and see what it does!

[Daveman]

Excelent Bream,

Don't think there should be any "cold turkey" effects, other than the normal abstention "cold turkey". If you're used to once a day or so, none could be difficult. Hope you can hang in there.

The new fenugreek, garlic spinach aproach sounds GREAT. Keep us up to date with your progress.

Interesting about the analysis of the "white stuff", that he said it was nothing. My "white stuff" is normally eliminated at about 3 or 4 in the morning. If Iwould take a sample when I get up, there wouldn't be any by then, and I would already feel better. Did you take the sample "with actual white stuff" in it? Just to double check.

[Willem]

Good luck Bream.

The times that I've been able to abstain I start feeling pretty terrific after about 2 to 3 weeks.  I wouldn't wish POIS on anybody, but hopefully it's the answer to your mysterious condition. 

[Daveman]

Bream,

If possible it could be useful that another test of the "white stuff" be taken. Rather than letting te doctor say, "no Problem", it would be very useful that we know what the results of the test actually are. I could tell us something about POIS that no normal doctor could recognize.

We are preparing to begin a professional research program, so every piece of information could be crucial, even if some doctor who's never hear of POIS says it's nothing.

So if you get the chance again, capture a sample whenever it may appear (following nordnurses instructions, white stuff thread), even if it's at 3 in the morning. It can be saved in the fridge for 24 hrs.

Thx

[Bream]

Thanks Willem, really looking forward to feeling good during the day, that would be the first time in a long time.

Yes Daveman, the sample i collected had the 'white stuff', though in my case it's more like grey. Lately i only have it on occasion, sometimes i don't have it for months and didn't have any during my abstinense (11 days now). When i have it, it does not bring any relief like others seems to have.
I will try to collect some and have it analyzed. Has anyone done it yet? Seems to me like some protein.

If my head clears up within the next weeks it must be POIS and i will have to make a plan to get my doctor involved. I bet he will never have heard of it, but with the right approach i think he will go along (more tests, testosterone patches).
And i will then also be more than happy to work together with you guys to get a better understanding of this illness.

[Habibou]

  how is it possible to get an O everyday for 30 years
How did you survive with that? did you try some things to feel better? 

[Bream]

I usually always have an O before sleep (masturbation and in relation) and the only effect is i get sleepy. In fact masturbation is my sleeping pill.
IF it is POIS, it seems my symptoms stay at a certain level only to get a bit worse for a few days when i stop having O's. Even with 2 or 3 O's i do not notice any difference. I always had a healthy sex drive, which seemed strange with such low testerone. But reading on this forum, this seems rather normal with POIS sufferers.

[Daveman]

Some of us find the opposite, that they don't sleep the first night. Myself, I sleep poorly because I feel like crap. Lots of wierd dreams.

I almost always do it at night though becasue it's a lot easier to pass the first hours sleeping even if it's bad sleep.

I can still feel pretty crappy as I wake up, but once I get out of bed and start to move around, at least for the morning I feel better (than the night). By noon, I'm usually full POIS again, and preparing for the brain-fog.

[Bream]

Daveman, we are different when it comes to O's at night then, i just get sleepy and sleep well. Today is day 14 and still no improvement 
It's surprisingly easy to stay abstinent, but i do miss the sleeping pill.
The brainfog hitting you at noon sounds all too familiar.

Today i read something interesting on the NSF:
"Sexual dysfunction: Postorgasmic illness syndrome, Suzanne J. Farley
Abstract: New evidence supports the hypothesis that postorgasmic illness syndrome (POIS) in men involves a hyper-reactive immune response of the mucosal epithelium that lines the urinary tract to seminal fluid."

In 2010 my feces was tested on several things among which beta-defensin 2.
- beta-defensin 2: 139,20 ++ (ref < 23, so 6 times the maximum value)
I understand that BD2 is an anti microbial peptide made in mucosal epithelium cells and a high level indicates a hyper-reactive IS (the IS part you are born with). I wonder though if BD2 from the mucosa near the urinary tract would show up in a fecal test.
Anyway, i wouldn't be surprised if the white stuff comes the reaction in this mucosa, but i don't believe it's semen.

[Willem]

Today is day 14 and still no improvement 

Dang.  That sucks.  The wife and I are currently trying to get pregnant, but afterward I plan on joining you in the experiment and see how long it takes before I start feeling better.  Hopefully in the next week you'll notice things clear up. 

[Bream]

You are welcome to join Willem Hopefully you and your wife succeed soon in getting pregnant.

Day 17 today and still nothing. Since i may have been in POIS for 34 years straight my body doesn't know any better.
Abstinence seems no problem sofar, but falling asleep is hard. I noticed garlic at night can keep me awake, like coffee does.
I'm trying some sleeping remedies like malatonin, magnesium and ashwaganda now.
I have been falling asleep every afternoon for the past few days, but maybe that's a sign of recovery in some way.

I'm reading the NSF in bits and pieces, trying to pick up some insights and tips. I'm still only on page 50, so over 500 to go..

[Bream]

Captains log, stardate 21 days. Still no improvement. 
I wonder if 34 years of POIS could have worn out adrenals and thyroid. Alot of symptoms for hypothyroidism and adrenal fatigue apply to me as well.
That could mean that if POIS is the source it could take longer, maybe even a few months before feeling better.

A question: how specific is the white stuff to POIS? Are there any other conditions with this symptom?

[rock27]

Bream,
was your low testosteron score soon after an orgasm?

I have done several tests for testosteron. The results fluctuated. One was below range (day 3 I think), but I also had one in top third of the chart (out of pois).
So my low was only temporary.

From adrenal fatigue I learnt that it is important to keep your electrolytes in your blood in balance. In POIS, I drink water a lot and pee a lot. Because of this, I lost a lot of salt and this made me feel very bad, and still thirsty. Once I started to drink water with a little sea salt in it, I felt a lot better.

[Bream]

Hi Rock. T was tested in the morning, before taking the Andriol. So usually about 8-10 hours after orgasm. This all happened 7 years ago, i had no idea orgasms could play a role in my condition. I'm planning a visit to my doctor and have it tested again, together with vit D, more hormones and if possible neurotransmitters like dopamine, vasopressin etc.

Looks like, reading you and others, T drops during POIS which can add to the misery.

Yes, i read the book by Wilson on Adrenal fatigue and he suggests a couple of glasses of water with salt starting early in the morning.
Somewhere on NSF it says that Celcic sea salt is best. I'm using normal sea salt, but i haven't noticed any difference yet.
One poster on NSF mentioned his girlfriend who suffered from POIS was almost symtoms free after taking a salt solution.

I'm still reading NSF every day, i'm on page 111 now. Fascinating stuff, it reads like a medical thriller! Long way to go however.

[rock27]

OK Bream. Good luck on the testing!

Just wondering, how did you find the forum?  Was it hard to find?

[Bream]

Thanks Rock. I was reading a dutch forum about hormonal disbalances where also Vandemolen wrote about POIS. When i googled POIS the first hit (that was not about the poi fish) was the NSF which refers to this forum. Also i sent a pm to Vandemolen and he suggested to post my case here.
The NSF is such a long thread but it seems silly to post there not knowing what has been discussed before.

[Vandemolen]

Bream, you are a member now. Great. Welcome.

The NSF forum is great to read. Almost a year ago I also read all the messages on that forum. But when I was on page 15 someone suggested that this helps, but on page 20 the same person said it doesn't work anymore.
For some people Relora helps, a Dutch guy doesn't have POIS-symptoms anymore. But I and others tried it, zero relief. The only 2 things that doctors did and which works for some people, is: 1. Testosterone treatment (Demografx). 2. Injection therapy (I have this).

So you are in The Netherlands. The best way to know if you have POIS is to write an email to dr. Waldinger. He is very busy right now. So I don't know if you get an answer. I too had to wait a few months. But it was worth waiting because I am his patient now and I am on the injection therapy. You can find the contact information here:

http://www.post-orgasmic-illness-syndrome.com/nl/afspraak.html

Good luck!

[Bream]

Thanks Vandemolen. Today is day 22 and still not out of the woods yet, so i can't be certain if it is POIS or if POIS could be part of a bigger picture. However, the POIS symptoms are EXTREMELY familiar, except for the pains and depression which i do not have.
My main problem is de brain fatigue/fog and this place (and NSF) is the first forum i came across which is acually discussing and analyzing this fenomena in detail.

Yesterday evenening i felt a little better and had a craving for some sweet food. After i ate some i immediately felt worse in my head. Reading the NSF i learned that sweet foods can trigger an inflamation reaction causing a hormonal and neutrotransmitter mess up. So my next step will be eliminating sweets and changing to anti-inflamatory diet. See what happens.

I've read about dr. Waldinger and his approach, and also read the thread about your treatment. Looks like you could have some results pretty soon! That would be really great. Do you know how many people have been cured by this program?