[John21 (OP)]

B.Daniel, I would listen to the docs on that issue, I wouldn't want to mess with T levels if everything appears normal. Have you tried fenugreeek? I have been having no symptoms from my NEs and fenugreek might be the reason why.  I also often try to eat anti-inflammatory foods.  I have been chaste for 3-4 years now so it is also possible that my body is better able to deal with whatever POIS is, but I suspect that this is not the most influential reason,

[Quasar]

B.Daniel, I would listen to the docs on that issue, I wouldn't want to mess with T levels if everything appears normal. Have you tried fenugreeek? I have been having no symptoms from my NEs and fenugreek might be the reason why.  I also often try to eat anti-inflammatory foods.  I have been chaste for 3-4 years now so it is also possible that my body is better able to deal with whatever POIS is, but I suspect that this is not the most influential reason,

I've found this about Fenugreek:

"A formulation containing a standardized extract of Trigonella foenum-graecum and minerals was associated with an improvement in libido for 81% of the men in the study, and a 63% improvement in the "quality of sexual performance," compared with no such improvements in the placebo group, according to findings published in Phytotherapy Research.

The study used Gencor’s Testofen® ingredient and was conducted by scientists from Applied Science and Nutrition Pty Ltd, Clinical Trials, Brisbane and the University of Queensland.

The Australian researchers recruited 60 healthy men aged between 25 and 52, and randomly assigned them to receive 600 mg of Testofen per day or placebo for six weeks. None of the men had erectile dysfunction at the start of the study.

In addition to the reported improvements in libido and quality of sexual performance, the researchers noted that 66% of the men in the active intervention group reported improvements in recovery time, 82% reported improvements in general energy and 56% reported improvements in well-being.

It was concluded that Testofen demonstrated a significant positive effect on physiological aspects of libido and may assist to maintain normal healthy testosterone levels.

Commenting on the active ingredients and the mechanism, the researchers note that saponins are probably responsible for these physiological effects. "The mechanisms may be quite complex," they said."

[Quasar]

One more thing i'd like to comment: Does anyone have some trouble maintaining eye contact? I have a lot of trouble maintaing it when i am under Pois. I don't know if it's because i don't want people to see that i am not fine (headache, etc.), or if it's because Pois does some brain chemistry changes.

Without Pois i also have some trouble maintaining eye contact, but i don't know if it's because i'm a quite shy person, or because i've got some imbalance, but every additional day without Pois my eye contact improves.

[pois1]

Has anyone experienced light sensitivity with POIS?  I get the usual symptoms with POIS but I also tend to immediately get pale and get some sensitivity to light for a day.

[demografx]

I wanted to try T-therapy, but to see an endocrinologist you've first got to see your primary and get lab work done.  So I had some blood lab-work performed finally. 

The doc had me get a whole bunch of things tested but there were the only 3 i thought that matter to us.  Here are my results:

Testosterone, serum:         540 ng/dL      Reference interval 249 - 836
Free Testosterone (direct): 13.3 pg/mL    Reference interval 9.3  - 26.5
Vitamin D, 25-Hydroxy:      43.0 ng/mL    Reference interval 32  - 100

So none are low.  The Vitamin D may just be normal bc just 2 weeks prior I had been in the sun for 2 weeks straight.  The testosterone though I was surprised about, given all the discussion we have on this site about pois closely correlating with low T - I had all but assumed mine was low. 

Anyway, so I asked my primary about putting me on T-therapy.  He said NO given my normal levels.  I then asked him to refer me to an endo to discuss this with.  He was hesitant to do so bc he said he greatly advises I dont take an unnecessary risk with T-therapy (he thinks there's a 0% chance it'll help me), but begrudgingly agreed.  I asked him to refer me to one of the best doctors in the area... the supervising physician in UCSF's endocrinology dept, whose name is Dr. Blake Tyrell.  My doctor sent him an email, which he didn't let me see.  But here is Dr. Tyrell's response:   

... I have heard of this once (POIS) before but could find no evidence that it is an endocrine disorder.
Given that his testosterone is 540, I would agree that androgen therapy is not indicated.
So-we would not see him."

I can't say I'm surprised by that.   But I thought I'd share.  I have found an internist who also has a phD in sexology - so I have an appt with that guy in a month.  hopefully that yields better results

In my earlier days of testosterone experimentation, I went through a similar thing with my docs, and I just got...ANGRY and aggressive. I DEMANDED testosterone, and talked very emphatically about POIS as if I were a worldwide expert (I was!!).

The fact is: doc's don't know!

It worked. They put me through a lot, but it worked. And now I am on TRT with proper testing and a sympathetic endo.

HOWEVER, THERE ARE RISKS WITH TRT (TESTOSTERONE TREATMENT) AND THEY NEED TO BE UNDERSTOOD BY ANYONE CONTEMPLATING TREATMENT. THE POSSIBLE INABILITY TO RE-START YOUR NATURAL TESTOSTERONE PRODUCTION IF YOU QUIT TRT IS AN IMPORTANT CONSIDERATION.

My hunch (NOT empirically proven fact) is that TRT can help anyone, regardless of testosterone readings.

[Vincent M]

To Quasar and pois1: yes other members here have previously mentioned that during POIS light sensitivity is increased, eye contact is more difficult, and anxiety in general as well as social anxiety is increased.

I know I experience all of these things while in POIS.

[Vincent M]

This morning, I applied 6 patches at POIS onset, way beyond the normal dose. It might not be the safest thing, but we are guinea pigs in POIS and I'm willing to grow a 3rd ear to help cure this damn stupid disorder!

Demo, it's true it may not be the safest thing. And it seems testosterone therapy may have helped you only because it possibly permanently stopped all sperm production in your body, correct?

I'm just saying that if this is the case then it may not be the best course of treatment for B_Daniel to take at this time in his life. (I'm not sure how old he is)

[Defsync]

i am posting this only as a record of failing to deal with this disorder, for future researchers.

i found a girl, and also a new job that required much more intellect and cognitive focus then my last job. Unfortunately, it was becoming apparent that ANY intercourse at all, even where I dont have a full orgasm, was impacting my work. Also this girl was incredible beautiful and sexy, and wanted far more intercourse then I would ever be able to give her.

To her credit, she was willing to continue the relationship with as little intercourse as I could provide, probably God's gift to a POIS inflicted man. However, it was far too great to ask such a sacrifice of such a beautiful passionate and very sexual young woman.

I then came to realize that I needed to never have intercourse again, and that that it pretty much meant the end to any possible meaningful relationship ever in my life. I also realized that such a relationship was the only thing that was going to truly make me happy in this life.

I flipped out. I lost the girl, I lost the job all in the same week. I have completely fallen from grace. Soon I will be homeless and/or worse. I have lost the will to continue on with a normal life.

I have unsuccessfully dealt with this disorder my whole life. Not knowing that the intercourse was causing the cognitive loss in the first 20 years of my life did immeasurable damage to my self worth and peace of mind. I am now 34.

Knowing now that I am never going to be able to have a meaningful relationship ever, and that that is the only thing that I've ever really wanted to make me happy, has made the will to live very difficult. Although I would never kill myself outright, I find no other recourse but to do everything else possible, short of anything illegal (jail... i still have a conscience).

I wish you all the best of luck in your endeavors, and I am truly sorry I couldnt be of more help, although my celibacy regimen to prevent nocturnal emissions I do consider a great offering.

Peace

[Willem]

This morning, I applied 6 patches at POIS onset, way beyond the normal dose. It might not be the safest thing, but we are guinea pigs in POIS and I'm willing to grow a 3rd ear to help cure this damn stupid disorder!

Demo, it's true it may not be the safest thing. And it seems testosterone therapy may have helped you only because it possibly permanently stopped all sperm production in your body, correct?

I'm just saying that if this is the case then it may not be the best course of treatment for B_Daniel to take at this time in his life. (I'm not sure how old he is)

I agree, and will go out on a limb and guess that Demo understands very well the drawbacks of a testosterone treatment and which POISers it might or might not be suitable for.  I personally wish he would advocate his treatment even more, but it's tough knowing who might be a good candidate (I'm not, still young and plan on having more kids).  Honestly, I want EVERYONE to strongly advocate for the treatments that they've found to work so we can build more cases and improve lives. 

[B_Daniel]

You spin your wheels faster than those around you, but you move so much slower.  Every day presents a new struggle, but those struggles dont seem to make you stronger - instead your growth as a person feels stagnant, which is amazingly frustrating.

Defsync, without pois you're capable of being with a beautiful girl and working in a challenging field, and why settle for 1% less than what you're capable of.  But pois brings cuts you in half and really changes your emotional, mental, and behavioral profile.  you're a different person with pois, and you need to find the job and girl that are perfectly compatible with THAT, not with yourself without pois.  I think you need to accept a less rigorous job until you can manage your pois better.  And then on the girl front, it's painful to lose someone you love, but there are many great girls out there - not all of whom are so sexual.  If a relationship is what you're after, don't stop until you've found the perfect girl.  she has to be caring, understanding, and compatible with you on your good and bad days - not just your good days.  Also, you may need to put more effort into learning how to manage your pois (fenugreek, niacin, abstinence, whatever...).  

Defsync, I hate to use your sad situation as a plug, but what you've gone through is reminiscent with all of us - maybe not to that extent though.  We're all so much closer to letting our lives fall apart than we are to excelling and reaching new heights.  I also didn't know for 14 years that I had pois.  I wondered why my whole family was smart, capable, and successful and was typically moody, untalkative, nervous, and on the dumb side (what a combination, huh).  We've each lost so much through pois - we really need to beat this thing (nord nord nord).

also, completely giving up is not the answer.  youve worked your whole life to be where you are, dont break down and give it all up.  deep down you've got to know thats not the answer.  I'm sorry this has all happened to you.

[demografx]

This morning, I applied 6 patches at POIS onset, way beyond the normal dose. It might not be the safest thing, but we are guinea pigs in POIS and I'm willing to grow a 3rd ear to help cure this damn stupid disorder!

Demo, it's true it may not be the safest thing. And it seems testosterone therapy may have helped you only because it possibly permanently stopped all sperm production in your body, correct?

I'm just saying that if this is the case then it may not be the best course of treatment for B_Daniel to take at this time in his life. (I'm not sure how old he is)

I agree, and will go out on a limb and guess that Demo understands very well the drawbacks of a testosterone treatment and which POISers it might or might not be suitable for.  I personally wish he would advocate his treatment even more, but it's tough knowing who might be a good candidate (I'm not, still young and plan on having more kids).  Honestly, I want EVERYONE to strongly advocate for the treatments that they've found to work so we can build more cases and improve lives. 

VM, your statement/question, "And it seems testosterone therapy may have helped you only because it possibly permanently stopped all sperm production in your body, correct?" is unlikely to be true. Why? I have no sperm, yet I still have POIS.

We will never know if testosterone caused zero sperm count, unfortunately, because I did not do "before" and "after" sperm testing. Only 2+ years "after" starting TRT. I contacted both the manufacturer of my testosterone, Watson Pharma, and my endocrinologist, and neither believed testosterone caused my zero-sperm count.

But even if we did have that information, we still do not know the role that non-sperm semen plays in my POIS.

Semen still seems to be related to my POIS. Somehow. But could it be the ejaculatory mechanism itself that causes POIS instead?

We are still facing a mystery!

But yes, I have repeatedly stressed THE RISKS associated with TRT. I have done that deliberately and continuously here at the forum.

I have pointed that out to B_Daniel, yet he seems to still be interested in pursuing it.

I will send this to him by private message as well.

[B_Daniel]

defsync's case shows the harm that pois can do.  how much harm can T therapy do and will it be worth it?  I guess that depends on how much of a benefit it is to me.  Which I won't know until I try.  It'll likely be a couple months before it begins - but assuming a doctor approves of me to try it, I'll certainly keep you all informed of how it works out.  thank you all for your concern.

[silverandcol]

Ahh light sensitivity is such a pain.  When I go outside with POIS it feels liek the sun is drilling through my eyes. 

Also Defsync, please give niacin or xanthinoal nicotate a try.  It makes pois so much more manageable, almost to the point of a full normal life.

=D

[Stef]

Hi All,

I hope you don't mind my leaping in here.

I feel compelled to respond to Defsync and to comment on testosterone treatment (TRT).

First -- Defsync -- NEVER SAY NEVER!!! There are so many possibilities on the horizon for POIS, and for now there is at the least the potential of TRT and niacin. And there are very likely a few other potentials that have not yet been published.

From what I have read on both forums, POIS can make a person feel absolutely hopeless and severely depressed. Part of that is the result of the isolation that POIS causes, but another major part may actually be the chemical effect of POIS, physically, on the brain. It's really hard to remember this when feeling so horrid -- that the POIS, itself -- whatever it is -- can have a direct effect on the brain.

This is ONE MISERABLE DISORDER!!!

You've got great support and suggestions here and on the SMF site. Please try some of those suggestions until a major treatment is discovered.  You have no idea what treatment might be just around the corner!

Regarding the TRT, as Demo says, there are risks. But -- it should be understood that lab values are not the end-all, be-all regarding any type of hormone replacement therapy.  A GOOD endocrinologist - especially one whose focus is andrology -- will understand that the lab values only provide some information.  Also, testosterone levels vary throughout the day, and vary from day to day.

What matters most are the symptoms of the patient -- there are many subtle ones that a good andrology/endocrinology specialist will be able to ascertain.

I'm not trying to push TRT, by any means!  But just want you all to be aware that one test does not provide an answer, and that a lab reference table is not a human reference table!  Sometimes, just a really small dose of certain hormones (testosterone and thyroid hormone come to mind immediately) can make a MAJOR difference in one's health and quality of life.

It's so important to do what Demo did -- get assertive, advocate for yourselves, don't take a simple "no" for an answer. If possible, enlist the help of a friend when going for your appointment -- two are stronger than one, especially when feeling so vulnerable.

Although the exact cause(s) and treatment(s) for POIS are not yet clear, any physician who leaves you to fend for yourself is not the right physician! That's a red flag -- and a BIG indication for a second, or third, etc, opinion.

       

[CertainlyPOIS]

defsync's case shows the harm that pois can do.  how much harm can T therapy do and will it be worth it?  I guess that depends on how much of a benefit it is to me.  Which I won't know until I try.  It'll likely be a couple months before it begins - but assuming a doctor approves of me to try it, I'll certainly keep you all informed of how it works out.  thank you all for your concern.

Defysnc you definately dont want to give up just yet, try some niacin seems to be helping alot and start looking for an allergist that can help with you immunotherapy.

[CertainlyPOIS]

defsync's case shows the harm that pois can do.  how much harm can T therapy do and will it be worth it?  I guess that depends on how much of a benefit it is to me.  Which I won't know until I try.  It'll likely be a couple months before it begins - but assuming a doctor approves of me to try it, I'll certainly keep you all informed of how it works out.  thank you all for your concern.

Defysnc you definately dont want to give up just yet, try some niacin seems to be helping alot and start looking for an allergist that can help with you immunotherapy.  If you give up the deperession is definately going to drag you to beyond worse.

[Vincent M]

VM, your statement/question, "And it seems testosterone therapy may have helped you only because it possibly permanently stopped all sperm production in your body, correct?" is unlikely to be true. Why? I have no sperm, yet I still have POIS.

We will never know if testosterone caused zero sperm count, unfortunately, because I did not do "before" and "after" sperm testing. Only 2+ years "after" starting TRT. I contacted both the manufacturer of my testosterone, Watson Pharma, and my endocrinologist, and neither believed testosterone caused my zero-sperm count.

But even if we did have that information, we still do not know the role that non-sperm semen plays in my POIS.

Semen still seems to be related to my POIS. Somehow. But could it be the ejaculatory mechanism itself that causes POIS instead?

We are still facing a mystery!

But yes, I have repeatedly stressed THE RISKS associated with TRT. I have done that deliberately and continuously here at the forum.

I have pointed that out to B_Daniel, yet he seems to still be interested in pursuing it.

I will send this to him by private message as well.

You're right, we can't know for sure how testosterone treatment has helped you, Demo. Also you do always point out risks and advocate safety. I just woke up and I'm out of it so ummm carry on lol. Carry on fighting the good fight! Down with POIS!

[Itsthatskater]

Alright I have to say enough is enough, It is literally haunting me and my dreams, Im scared to ejaculate. I cut off from sexual activity completely for now, But sometimes it happens when im sleeping and I have no control over it whatsoever. I hate the feeling, Im not weak but when i try to use my arms it just doesnt happen. My sinuses flare up, My brain shuts down, and I have the least bit of motivation ever. I cant keep living like this.

[demografx]

Itsthatskater, my heart goes out to you!!

I went through 35 years of feeling like that. You know what helped me (before my successful POIS treatment)?

FIGHTING!

Yes, whatever it takes for you to go "the next round".

For me, that meant tracking down an "expert" on CNN. Calling another "expert" in the Czech Republic. Marching into a doctor's office insisting on supervised testosterone injections. Posting like  a madman at this forum ! Talking to other POISers!

Get the picture?

[demografx]

Vincent Marcus, thank you so much for that kind reply ! (3 posts above)