Completely helpless. I need major advice on how to get help for this.

[Pentrazemine]

Hello, I've been suffering POIS all my life and I recently went to the Urologist to discuss my condition and he slammed the door with the 'psyche' card. He recommended me to a psychologist and said it might be psychosomatic and behavioral not physiological. This has greatly destroyed my hope for managing my condition as it's so rare that even my own personal doctor refuses to acknowledge it.

What can I do to reach doctors who are well-versed in this rarity? I have no where else to go and I'm living in New York.

I don't know what to do or how to reach access to getting treatment for this because I've gotten blood-work done from the urologist and if that comes out normal along with the seminal analysis...I don't know what else to do! I'm considering of dropping out of school because my condition severely hinders my cognition - it's that bad but no one else - not even my parents - refuse to acknowledge it as real. They also tell me to see a psychologist.

Please help me....

[Quantum]

Hi Pentrazemine,

You have come to the right place for understanding and help.  You will find much useful information on this forum.

You are not alone, and POIS is real.  There is over 400 members who have the same problem as you have, so it is not your imagination.  Symptoms, severity and duration may vary from one sufferer to another, but brain fog and impaired mental capacity, like you have, is fairly common.  Extreme fatigue is also a commonplace for POIS sufferers.

There is nothing showing in blood tests, and there is no diagnostic criteria yet, apart from some criteria of clinical presentation established by Dr Waldinger, the doctor who was the first to write about POIS.  Most MD never heard of it, have no information about POIS, and thus, cannot help you.  A scientific study, founded by the members of this board, is currently ongoing, so there is hope for a better medical understandng of the cause of POIS. 

There is a lot of valuable information on this forum, as well as suggestions of lifestyle changes and supplementations that can be of help in order to lower the severity and duration of the symptoms.  You can find lists of useful treatment suggestions that have worked for others in threads like http://poiscenter.com/forums/index.php?topic=75.0 ,   http://poiscenter.com/forums/index.php?topic=74.0  and http://poiscenter.com/forums/index.php?topic=73.0.  You may have to go slowly and safely, and may not find on the first try, as a specific supplement may help some and not others.  There is no single vitamin or supplement known yet that is helping everyone.  For example, niacin is good for many, but not all.

Some members have posted their own way to cope in individual posts, like I did at http://poiscenter.com/forums/index.php?topic=2090.0 . These posts may be helpful for you too.

So take your time and search this forum, and ask questions if you want.  At least, you now know that you are not alone in the world with this condition. 

A psychologist may help you cope with this condition, but will not cure you.  It will only help you with the emotional distress that POIS causes in our life and our relationships.

In the meantime, even if not always easy, abstaining from ejaculation or minimizing the frequency of it, until you have found something useful to help decrease your symptoms, is a good idea.


Take care,

Quantum

[Pentrazemine]

Thank you. Another question, though.

The urologist wants me to get a seminal analysis/semen work but for obvious reasons I don't want to risk lowering my cognition even more by jerking off.

Should I go with the semen test for the lab or bail out? I hear there is a way to test whether someone has POIS via allergy compounds in the semen...should that be a viable option to finally 'prove' these doctors that our condition is real?

Please respond!

[Stef]

Thank you. Another question, though.

The urologist wants me to get a seminal analysis/semen work but for obvious reasons I don't want to risk lowering my cognition even more by jerking off.

Should I go with the semen test for the lab or bail out? I hear there is a way to test whether someone has POIS via allergy compounds in the semen...should that be a viable option to finally 'prove' these doctors that our condition is real?

Please respond!

Hi Pentrazamine,

It sounds like your urologist is doing a standard work-up for someone who reports a problem with sexual activity. But as everyone here knows, POIS is anything but standard.

I suggest reminding him that ejaculation leads to your feeling really sick (or whatever word you want to use) for several days afterwards, and that you don't want to put yourself through it unless absolutely necessary. Ask him exactly what he'll be testing your semen for, and also ask what the "risks" are if you don't have the test at this time.

If he brushes off your concerns and/or seems insensitive, or if he just doesn't seem to "get it" -- then he's not the right doctor for you. You can leave this doctor and find a new one. Your medical records from him will be available for you to bring to the next doctor if needed -- you're entitled to all your medical records.

It might be helpful to send a private message (PM) through this site to the Rutgers study's clinical coordinator, Dr. Wise. Her username here is, "DrNanWise". You should be able to search for her name on the forum, then click on the email icon below her name on her profile page, and send the PM. She may be willing to ask Dr. Komisaruk for a physician-colleague recommendation. Let her know where you live (the nearest large city) so that Dr. K can possibly come up with a really good doc in your vicinity.

They both know that POIS is not a psychiatric disorder, and Dr. K has many reputable colleagues.

I hope this helps.

Stef

[Pentrazemine]

Thank you, but for the seminal analysis he says he'll be testing my semen for antibodies but he says these bodies are generally good for the body.

In order to prove that I have POIS what necessary semantics should I be using on him? What should I be asking him to test, exactly?

[Nightingale]

There is no accepted diagnosic test for POIS yet, as there has yet to be a test that results in an effective treatment being administred.

I work with many physicians to take care of my health, but I also have brought on "alternative" medical practitioners. I have found this to be a mixed bag, but I have always found them to be much more accepting of POIS as a real illness. I work with a practitioner who uses my genome to identify mutations and possible insufficiences that are aided by supplementation. I was overwhelmed with the idea of how to find such a person, but I've found a good resource with many possible docs some of whom will work with you over a distance (my practitioner and I meet over Skype)

Send me a PM if you are interested in finding a practitioner like this.

[Stef]

Thank you, but for the seminal analysis he says he'll be testing my semen for antibodies but he says these bodies are generally good for the body.

In order to prove that I have POIS what necessary semantics should I be using on him? What should I be asking him to test, exactly?

Pentrazamine,

I don't think there are specific words that can convince your urologist that you've got POIS. It's not something that can be proven -- yet.

It's nice to hear that your doc is willing to at least order a semen test for antibodies, indicating that he's not completely close-minded about POIS. But to date, no semen antibodies have been identified for POIS. So the semen analysis he's suggesting may not be helpful to you, and may not be worth the misery of producing the specimen. (But it could rule out certain other conditions, like an infection.)

The most important thing is to have a physician who is open-minded, knowledgeable, and willing to work with you.

I do think you would benefit from contacting Dr. Wise to ask if she or Dr. Komisaruk can suggest a physician with some familiarity with POIS. There would certainly be no harm in asking.

Stef

[Pentrazemine]

So realistically speaking, how long until we can find a cure or at least gain mainstream legitimacy in the medical world?


Do you think a cure will be here within the next decade? (2020's)

[Stef]

So realistically speaking, how long until we can find a cure or at least gain mainstream legitimacy in the medical world?


Do you think a cure will be here within the next decade? (2020's)

Pentrazemine,

Mainstream legitimacy for POIS has already begun with Dr. Komisaruk's study. He's well-known in the field of sexual medicine and is a highly-respected researcher. That's why I suggested that you contact him or Dr. Wise for a possible physician referral.

My hunch is that progress will occur within the decade (definitely earlier rather than later!). This condition has never received focused scientific attention before, but now it finally is...and by a researcher with impeccable credentials.

For what it's worth, I've felt all along that POIS just needs some solid, serious research, and that's what is now happening. The answers won't be far off.

Stef

[Pentrazemine]

And another question but is it unusual for me to have severe POIS symptoms but purely cognitive-related? I have zero physical symptoms but my cognition gets extremely low everytime I ejaculate. Could the biochemical synthesis of my seminal fluid have 'lopsided' the effects on purely mental matters?

[Quantum]

And another question but is it unusual for me to have severe POIS symptoms but purely cognitive-related? I have zero physical symptoms but my cognition gets extremely low everytime I ejaculate. Could the biochemical synthesis of my seminal fluid have 'lopsided' the effects on purely mental matters?

Hi Pentrazemine,

There are many "sub-types" of POIS.  When I found this forum in November of last year, I have developed for myself a way to classify the different subtypes of POIS presentations, mainly through regrouping the symptoms in different clusters, and grade the severity of symptoms for each particular cluster.  After I have been alone with my problem for about 35 years, I was comforted to see that I was not the only one with this condition, but I was also surprised at how many different presentations of POIS there was, even if they all revolve around the same kind of symptoms.  However, some members may have symptoms of only one of the clusters, or 2, or 3, or even from all 4, it vary a lot.  And the severity varies as well.

It is not a common pattern to only have cognitive symptoms like you have, but it is entirely possible, as POIS is an ever surprising syndrome, and comes in very 'custom' presentations.   My sub-type of POIS is, like yours, not common, as I have mainly  fatigue and severe emotional symptoms, and have absolutely no cognitive symptoms.  One of the most common type of POIS is one including fatigue, physical symptoms like muscle soreness, cognitive symptoms, and some emotional symptoms.   Allergy symptoms are less common, and I have noted that, usually, those who have allergy symptoms tend to show symptoms in all the other clusters as well.

Does that mean that you feel absolutely no physical fatigue during your POIS acute phase, which is one of the most common POIS symptom?

You do not have any emotional symptoms neither, like irritability, mood swings or anxiety?

You may take a look at the list of POIS symptoms I have made, regrouped in 4 clusters, and you may discover some symptoms you didn't though were related to your POIS - see this list at http://poiscenter.com/forums/index.php?topic=2027.0 . 

[Pentrazemine]

And another question but is it unusual for me to have severe POIS symptoms but purely cognitive-related? I have zero physical symptoms but my cognition gets extremely low everytime I ejaculate. Could the biochemical synthesis of my seminal fluid have 'lopsided' the effects on purely mental matters?

Hi Pentrazemine,

There are many "sub-types" of POIS.  When I found this forum in November of last year, I have developed for myself a way to classify the different subtypes of POIS presentations, mainly through regrouping the symptoms in different clusters, and grade the severity of symptoms for each particular cluster.  After I have been alone with my problem for about 35 years, I was comforted to see that I was not the only one with this condition, but I was also surprised at how many different presentations of POIS there was, even if they all revolve around the same kind of symptoms.  However, some members may have symptoms of only one of the clusters, or 2, or 3, or even from all 4, it vary a lot.  And the severity varies as well.

It is not a common pattern to only have cognitive symptoms like you have, but it is entirely possible, as POIS is an ever surprising syndrome, and comes in very 'custom' presentations.   My sub-type of POIS is, like yours, not common, as I have mainly  fatigue and severe emotional symptoms, and have absolutely no cognitive symptoms.  One of the most common type of POIS is one including fatigue, physical symptoms like muscle soreness, cognitive symptoms, and some emotional symptoms.   Allergy symptoms are less common, and I have noted that, usually, those who have allergy symptoms tend to show symptoms in all the other clusters as well.

Does that mean that you feel absolutely no physical fatigue during your POIS acute phase, which is one of the most common POIS symptom?

You do not have any emotional symptoms neither, like irritability, mood swings or anxiety?

You may take a look at the list of POIS symptoms I have made, regrouped in 4 clusters, and you may discover some symptoms you didn't though were related to your POIS - see this list at http://poiscenter.com/forums/index.php?topic=2027.0 .

I'm lumping cognition with emotion, sorry for my lack of clarity.I suffer absolutely zero physical symptoms or fatigue but my Cognition AND Emotional/Mood becomes extremely low/deficit. It's purely mental-based lacking any physical signs, least the physical signs are so minute that I don't care to notice.

So the closer the seminal fluid is to my ejaculatory duct - the increase of the severity of the symptoms. There's a high correlation in that scenario. This is why I cannot 'edge' since I get symptoms without orgasm.

I've noticed I'm the only one who suffers exclusively cognitive/emotion with no physicality to the ailment, kind of privileged in a way, hah.