[demografx]

Horizon, you had me worried for a sec, I thought at first that you wrote that you had a CAT on....ohnevermind, I need some more morning coffee...

"naughty kitty !"

Laurac, we shouldn't laugh. Science has stumbled on such solutions in stranger ways than this!  []

[silverandcol]

Hmm so I just found out about a disorder called non-24-hour sleep-wake syndrome.  Some of the symptoms in that disorder matches up with pois, so I thought it might be possible that pois disrupts our circadian cycle.  That’s why most people recover after the cycle is able to reset itself over time, about a week or so.  One of the things that got me to make the connection between non-24 syndrome and pois is that I definitely find it much harder to get up when I am in pois.

Any thoughts on this?

[demografx]

I had a CAT scan of my testicles today.

The radiographer doing the scan said there is a problem with one of the sperm ducts being too narrow on my right one (words to that effect).
I then explained how I feel fatigue after orgasm for about 3 days and wondered if there are testosterone or hormonal problems.

He said "it looks physical to me" and its something to take further with my doctor.

Horizon, previous kidding aside, I hope there is nothing wrong, and we are looking forward to hearing about your further discussions with your doctor.

[demografx]

bokonon, welcome to the POIS thread of The Naked Science Forum!




Here are some POIS resources which may be helpful to you:


Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
http://forums.delphiforums.com/POIS/chat

Our new POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here.
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only formal medical investigation on POIS by Dr. Marcel Waldinger,MD and Dr. Dave Schweitzer, MD.

There are 2 ways to get it: (1) if you want a PDF copy, send me a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and I'll send you back the PDF. Or, if you prefer, (2) I can simply reply with a Private Message (no regular email needed) and provide you with a simple text version embedded in your PM.

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.

Remember to put a quote around my name, i.e., "demografx".


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT "ALL IN OUR HEADS"!

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum, which has already been referenced in respectable sources such as the British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For for over 3 years, our POIS forum has attracted over 150 POIS sufferers worldwide who have posted here, plus over 600,000 page visits. Not bad for a rare malady!

[demografx]

bokonon, this post will help you find information about POIS that we have already discussed, by tailoring a Google search to this forum:


SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: 3 years' worth of posts (over 7,000 posts!) from 150+ Forum members, and an additional 150 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
demografx POIS site:http://thenakedscientists.com/

and 1,000+ results came up for "demografx" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.

[demografx]

One of the things that got me to make the connection between non-24 syndrome and pois is that I definitely find it much harder to get up when I am in pois.

Definitely true of my POIS history.

[Animus]

Animus,

I am pursuing further surgery to remove the seminal vesicles, reduce the prostate, and cauterize the ejaculatory ducts. The aim is to achieve a minimum of semen production, and dry ejaculation.
 

Is this what you had performed?

Hi John,
Yes, I did have the seminal vesicles removed by surgery. That was the longer and more challenging operation because they are located deep in the pelvis- but the urologist said he had no trouble doing it. Usually the seminal vesicles are removed at the same time as a full Prostatectomy, I think because they are somehow behind the prostate. So it is less common to remove them independently of the Prostate.

I also had a "TURP" which reduced the size of my prostate, while leaving it in place. My prostate was fairly enlarged. This surgery is fairly common for people with BPH, and is effective, and pretty low-risk.

As an extra measure, we also cauterized the ejaculatory ducts, which prevents any remaining seminal fluids from leaving the body.

Before these operations I took care of the problem of high levels of testosterone- I had enlarged testicles and elevated testosterone. In that process, I ultimately stopped Sperm Production. Also I was able to reduce my Testosterone levels to a healthy level.

Testosterone levels vary a lot among individuals, and the "acceptable range" chart is very broad.
I found it too broad to be helpful in terms of getting a "right T number", but it could be a vital clue. I think it's a great idea to chart the hormone levels pre- and post O, and get a sense of how much the changes are.

Animus,

I am curious,
did you have your testicles removed?
if so, what is it like without any testicles and seminal vesicles?
who's idea was it? yours or the doctors?

do you think differently, feel different without them?

did you need therapy or were pretty philosophical about it all?

although im not at all tempted,
i am curious.

OK thanks. It's really not a difficult issue, but I approach it carefully because people tend to get scared off by this kind of thing. But yes, I had my testicles removed. At first I had a single testicle removed because I wanted to lower my T levels and sperm levels, but as my doc informed me, it was just a matter of 4 months or so until the remaining testicle grew in size to compensate for the lost one, returning me to the same situation I was in originally. So 4 months later I had the other one removed too. But prior to that I banked a sample of my semen.
Um. The next thing to do was figure out the TRT, and I eventually found a very good endo in NYC to help me get to good T levels. That was 5 years ago, and I have changed very little from the level that we established. I now do a weekly self-injection of .35ml Test. enanthate, and I'm super pleased with the results. It is a very easy treatment.
I tried the patch, and the gel, but they didn't work so well for me and irritated my skin. I like the precision of injection amount- it makes measurement easy, and I found the patches and gel were harder to finely tune. Plus it was a daily hassle instead of once a week. So the TRT works really well, with no negative side effects. But it took a long time to find the right levels. So with the removal of the testicles I was able to stop sperm production, and lower T levels. doing that got rid of about half of my symptoms and improve my general health a lot. I had a very severe case of it.

It took me a while to find doctors willing to do my surgeries. But I was pretty desperate, so I was also very focused. For the oriectomies I found a urologist in PA who specializes in elective castration. He was a very kind and professional man and a former army doctor. I was very grateful to find him.
So he was willing to do the operation for me. And as far as discussing POIS with him, I think I made one attempt, but we didn't really get into it. I was essentially hiring him to do the procedure for my own POIS reasons.

Like I said, I had a very severe case, and I found that solved only about half my symptoms. Finding a urologist to do an oriectomy is relatively easy because oriectomies are done for various elective reasons. But finding a urologist to remove the seminal vesicles, do a TURP, and cauterize the ducts was harder. I essentially had to find a doc who I could hire to do what I wanted. I didn't even attempt an American doctor because ethical reasons wouldn't permit them. I searched India, because 1. it's cheaper there, and 2. because ethics weren't as big a problem, I guess. I found a "medical tourism" company, and developed a very good relationship with the owner, and he found a urologist in Nagpur who was willing to help me. I basically knew what I wanted done, which was to achieve dry ejaculation and minimize semen production. We basically came up with the surgical plan together. It took well over a year to set it up.

[demografx]

I now do a weekly self-injection of .35ml Test. enanthate, and I'm super pleased with the results. It is a very easy treatment. I tried the patch, and the gel, but they didn't work so well for me and irritated my skin.

Interesting. Injections didn't work well for me, and my endo said that injections "spike", they cause T to dramatically rise and fall within the body, but the patches distribute testosterone much more evenly, which mimics the way the body naturally distributes T.

Besides, I don't have the guts to self-inject  []

[Green]

Bah! I'm really struggling with POIS right now, I've abstained from any form of sexuality for well over two months now and I could feel today would not end well I've got an onset of POIS symptoms from a retrograde ejaculation, sorry about the graphic description - I could feel my prostate empty itself and into the bladder, the next time I went to urinate towards the end of my stream of urine for a good 10 seconds my semen was excreted and shortly after that I started to feel really hot then my lower eye lids become very heavy and then the worst ensues, brain fog, lower back pain, stomach pain but the only constellation of this is it'll pass A LOT faster than full blown POIS caused by a voluntary ejaculation.

I'm only 22 years of age, but I've had POIS since I was 12 years old, it's made the subsequent years absolute HELL, it's so damning to see all this effort the regular forum members have put in and still it doesn't seem we've touched the surface.

I've had a partial blood panel done, the discrepancies were low vit d, 269 ng/dl testosterone, free test was equally out of range, thyroid seems to be functioning correctly but cholesterol is quite high.

I'm awaiting the results of a HPTA blood test and then I start my quest to replace testosterone exogenously, I await anxiously to see the results and in my thoughts and prayers I really hope that they don't reveal I'm suffering from primary hypogonadism.

Be well fellow suffers.

[Guthrie]

...the discrepancies were low vit d...

Sorry to hear about your bad POIS day, green.  But, now you're the second person (after me!) to have reported a vitamin D deficiency.  I wonder, have other people on this forum had their vitamin D levels tested?  It seems like a test that is not always standard to have done, so perhaps it could be worth it for others to have it checked.  Or, perhaps others have had it checked and it came back normal? 

What say the rest of you?

[Green]

What were your blood levels for vitd3?

Mine was 10.55 ug/l

Common ground for people with low testosterone is also low vit d3, I remember reading sex steroid hormones are regulators of vitd3, but... my doctor seems the ONLY reason why it's low is because of lack of sunlight, his argument was that contact with sunlight helps increase vitd and the country I live in, UK there is very little of that all year round.

I've got some of the other results in front of me;

TSH - 1.53 uIU/ml
FT3 - 2.93 pg/mL
FT4 - 1.12 ng/dL

Calcium Method - PHOTOMETRY - 10.7mg/dL ref range 8.4-10.6

[daveman]

I've got an onset of POIS symptoms from a retrograde ejaculation, sorry about the graphic description - I could feel my prostate empty itself and into the bladder, the next time I went to urinate towards the end of my stream of urine for a good 10 seconds my semen was excreted and shortly after that I started to feel really hot then my lower eye lids become very heavy and then the worst ensues, brain fog, lower back pain, stomach pain but the only constellation of this is it'll pass A LOT faster than full blown POIS caused by a voluntary ejaculation.

Interesting green!

I have been seeing evidence of retrograde ejaculation in the last two months or so, although I suspected this was happening long before that, even suspected that it was the cause of my POIS symptoms. I only saw the evidence because of a change in housing that required using a "potty" at night instead of making te trek all the way to the bathroom in another part of the house (where you have to go outside to get to the main house).

I understand that "normal people" can also have retrograde, but that it doesn't cause POIS symptoms, so we have a particular problem that causes inflamation of soft tissues and menengi coverings of the nervouse system.

One thing I am interested in discovering is if retrograde flow is common to all of us. Is this retrograde flow cause of an abnormal auto-immune reaction to the sperm which is in some place that it should not be? Or is the regotrgrade flow a result of some hormonal imbalance which regulates neurological reflexes during the orgasm, or is the retrograde just a fluke in some of us?

Although I haven't looked into details in historical posts I haven't seen too many speak about the milky evidence in urine, also I image that not many are in a position to actually see it if they urinate "normally", so it could be happening in more than we think.

Haven't had any response to my suggestions that perhaps more of us monitor for this phenomenon.

Interestingly as well, along with the more clear evidence of retrograde, I have ben noticing that my symptoms are somewhat different than before. I am different than you in that when I expell the semen, which can be as much as 24 hours after the "O", my symptoms drop off dramatically. But they seem worse on the day "0" between "O" and expulsion!?

[horizon]

One thing I am interested in discovering is if retrograde flow is common to all of us.

No, definitely not with me, Im ejaculating normally (in terms of direction), theres no milky pee at all.

[daveman]

One thing I am interested in discovering is if retrograde flow is common to all of us.

No, definitely not with me, Im ejaculating normally (in terms of direction), theres no milky pee at all.

Thanks horizon

[Guthrie]

What were your blood levels for vitd3?

Mine was 10.55 ug/l

I've had my Vitamin D tested twice now. 

The first time was May 2009.  The results were:
D3: 12.9 ug/L
D2: < 2.5 ug/L
Combined D3+D2: 12.9 ug/L

After that, I started taking a vitamin D2 supplement.

When I got tested again, in August 2009, the results were:
D3: 13 ug/L
D2: 16 ug/L
Combined D3+D2: 29 ug/L

So my D2 went up, which meant that my total went up to 29 ug/L, which was still a bit below the desirable range.  But, presumably it has continued to go up in the last 10 months--I should get it tested again soon.

[Animus]

Hmm so I just found out about a disorder called non-24-hour sleep-wake syndrome.  Some of the symptoms in that disorder matches up with pois, so I thought it might be possible that pois disrupts our circadian cycle.  That’s why most people recover after the cycle is able to reset itself over time, about a week or so.  One of the things that got me to make the connection between non-24 syndrome and pois is that I definitely find it much harder to get up when I am in pois.

Any thoughts on this?

I think that's an interesting connection. I also found it very hard to get up when I'm having POIS.  And for me it brings up the question- why does it take around 7 days to recover from POIS?

[Animus]

I sent a few emails to researchers this year

Hello Martin,

Thank you very much for doing that! In my opinion, this is the most important task for our forum at this time!

Best regards,
demo

that's a good point.

[Animus]

One thing I am interested in discovering is if retrograde flow is common to all of us.

No, definitely not with me, Im ejaculating normally (in terms of direction), theres no milky pee at all.

Thanks horizon

I used to experience "milky pee" when I suffered from POIS.

[horizon]

And for me it brings up the question- why does it take around 7 days to recover from POIS?

This is the reason Dr.Lin gave me:

Your problem is a result of low testosterone production with excessive norepinephrine/sympathetic nervous fires inflammatory hormone prostaglandin E2 and histamine production while you have chronic cholinergic/vegal/parasympathetic/serotonin/GABA nervous control disorders.
During sexual arousal or after sexual activities,  your hypothalamus-pituitary-adrenal axis continuously release prolactin and stress hormones norepinephrine to induce inflammatory responses with excessive prostaglandin E2 and histamine release for body pains, itchy eyes, frequent urination and bowel movement and incontinence. and migraines/headaches/dizziness, and also to constrict and inflame your arteries your brain and testicles. This further bring your testosterone and DHT down to a critical level for severely postal-sex trauma and sexual exhaustion symptoms after 1-2 days after ejaculating. Then,  the symptoms will gradually mitigate when testosterone and DHT level go up. This happens in 3-5 days after sex. But, when your testosterone goes up a little more, leading to dopamine-norepinephrine conversion,  you get norepinephrine-induced prostaglandin E2 production for inflammatory pains and sexual arousal again. This happens when your cholinergic/vegal, serotonin and GABA nervous control on the dopamine-norepinephrine conversion is too weak to overcome the testosterone induced dopamine-norepinephrine conversion. When your your cholinergic/vegal, serotonin and GABA nervous control is too weak, testosterone is a double-edge sword, antiinflammatory and pro-inflammatory, and also causes mood swing.  Chronic excessive norepinephrine and prostaglandin E2 result in neuroplasticity for chronic sympathetic nervous fires and sexual exhaustion symptoms. And,  your bladder, prostate, rectum and anus experience sympathetic nervous Fight/Flight responses without any control from your cholinergic/vegal/parasympathetic/serotonin/GABA nervous systems.

I know Dr.Lin isnt exactly taken seriously here on the forum,

but what specifically has been found to be wrong in this diagnose on the forum???

Cheers

[demografx]

What I find wrong with "Doctor" Lin's diagnosis - actually, I find it quite disturbing - is that it's not based on any credible, peer-reviewed, scientifically conducted and journal-publishable study and follow up of Postorgasmic Illness Syndrome sufferers.