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Author Topic: My symptoms last for a whole month. Any advice?  (Read 11083 times)

Suffering1992

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My symptoms last for a whole month. Any advice?
« on: February 23, 2019, 10:10:15 AM »
Hello. I am a 26 year old living in NYC who has POIS. My symptoms are purely neurological [mental fatigue, cognition, irritability, etc]. I get absolutely zero physical symptoms. The only physical symptom I get is just blurry vision - which lasts for just the first two-days. The only problem is my mental symptoms last for a whole month. Not the typical 7-day cascade that a lot of people seem to get here.

My symptoms only stem from ejaculations, exclusively. If I orgasm multiple times [say 10 times] on the same day...the symptom severity and duration are the same as if I triggered it just once. If I edge and only a bit of semen comes out, then I will only get a little bit of symptoms proportionate to how much came out.

I am extremely helpless as I've been to multiple Urologists and none of them could help me, despite reading and empathizing about the condition.

Please help me.
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Quantum

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Re: My symptoms last for a whole month. Any advice?
« Reply #1 on: February 23, 2019, 11:01:37 AM »
Quote from: Suffering1992 on February 23, 2019, 10:10:15 AM
Hello. I am a 26 year old living in NYC who has POIS. My symptoms are purely neurological [mental fatigue, cognition, irritability, etc]. I get absolutely zero physical symptoms. The only physical symptom I get is just blurry vision - which lasts for just the first two-days. The only problem is my mental symptoms last for a whole month. Not the typical 7-day cascade that a lot of people seem to get here.

My symptoms only stem from ejaculations, exclusively. If I orgasm multiple times [say 10 times] on the same day...the symptom severity and duration are the same as if I triggered it just once. If I edge and only a bit of semen comes out, then I will only get a little bit of symptoms proportionate to how much came out.

I am extremely helpless as I've been to multiple Urologists and none of them could help me, despite reading and empathizing about the condition.

Please help me.

Hi Su92, and welcome to the forum.  You will find here much information, which will help you cope with this syndrome.

Take the time to look at the many posts of the forum, in the coming weeks, to get some understanding of how others live with POIS.

To begin with, I suggest you take a look at my POIS Types Chart, where are listed different methods that members have found through the years, that control their POIS symptoms.  No one single methods works for everybody, so I think there are different types of POIS.   You can try, slowly and one by one, some of these methods, and see what can help you, and, if possible, with the help and advice of a health professional   :   http://poiscenter.com/forums/index.php?topic=2338.msg19448#msg19448 .  For example, taking niacin before ejaculation seems helpful for many members.

Please, let us know what results you get, if you ever try any of these methods.

Do not hesitate to ask questions here, and read also about the upcoming POIS study this forum has provided the funds for !

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You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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Re: My symptoms last for a whole month. Any advice?
« Reply #2 on: February 23, 2019, 12:21:08 PM »
Quote from: Suffering1992 on February 23, 2019, 10:10:15 AM

I am extremely helpless as I've been to multiple Urologists and none of them could help me, despite reading and empathizing about the condition.


Exactly my experience with urologists :(
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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Suffering1992

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radical prostatectomy? The surgical cure?
« Reply #3 on: February 23, 2019, 12:34:32 PM »
What about a radical prostatectomy? If for some people the semen is what's causing the symptoms, like myself, then logically shouldn't removal of all organs that generate the semen be an effective 100% cure?

I live in the NYC area. Are there any doctors in my area willing to perform a radical prostatectomy in absence of prostate cancer for experimental purposes? In relation to this syndrome? 

I am willing to take the financial risk to pay for the procedure. Please help if possible.
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demografx

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Re: My symptoms last for a whole month. Any advice?
« Reply #4 on: February 23, 2019, 12:53:40 PM »
Suffering1992, I think someone tried that here, with disappointing results.

Belated welcome to the forum!


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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Suffering1992

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Re: My symptoms last for a whole month. Any advice?
« Reply #5 on: February 23, 2019, 12:57:38 PM »
May I ask who? I did some digging and found a user by the name of 'Animus', several years ago, who had a prostate reduction procedure, had his seminal vesicles removed, and he said he was pretty much cured.

So if there are different 'sub-types' of POIS...then shouldn't this procedure theoretically fix certain people like the aforementioned and possibly myself and others?
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demografx

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Re: My symptoms last for a whole month. Any advice?
« Reply #6 on: February 23, 2019, 01:06:12 PM »
You have the right individual. Not good long term results, from what I recall.

This is out of my league, but what if your POIS is somehow associated with your ejaculation mechanism and is not semen-related?

Anyway, Su1992, all I can offer is to be extremely cautious here. Again, I don’t think it worked before :(
« Last Edit: February 23, 2019, 04:29:31 PM by demografx »
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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: My symptoms last for a whole month. Any advice?
« Reply #7 on: February 23, 2019, 01:14:21 PM »
From Naked Science Forum: POIS thread (20,000+ posts)

“......   As you can see its a little bit modificated [sp] Animus Solution, because no one in Poland is willing to  ............  a orchiectomy on demand and as Animus says it does not help a lot. The two other parts  ......”

Su1992, search here:
https://www.thenakedscientists.com/forum/index.php?topic=6576.new#new

This link above will also take you directly to my announcement of the upcoming research study that Quantum mentioned.
Or see it here:
https://poiscenter.com/forums/index.php?topic=2462.msg27148#msg27148



« Last Edit: February 23, 2019, 04:03:54 PM by demografx »
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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Suffering1992

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Re: My symptoms last for a whole month. Any advice?
« Reply #8 on: February 23, 2019, 01:15:44 PM »
Animus had the TURP procedure or whatever it's called. He didn't completely remove his prostate. He just had it shrunk with meds. and he said his symptoms were seriously alleviated by the surgery. not 100% gone, though. due to not having the full radical procedure.

Also, even if it was ejaculation-caused then that still means a dry ejaculation would theoretically cure the symptoms, yes? It explains why some people like myself only get symptoms proportionate to how much seminal fluid comes out. if you remove the unknown substances in the semen that is causing auto-reaction upon ejaculation..then a dry ejaculation will make you cured. it sounds fairly reasonable.


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demografx

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Re: My symptoms last for a whole month. Any advice?
« Reply #9 on: February 23, 2019, 01:28:56 PM »
I do see your point about your POIS severity being proportionate to your semen emission volume. Still, I would be personally very fearful of being a...POIS surgery pioneer!
« Last Edit: February 23, 2019, 08:20:12 PM by demografx »
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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Nas

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Re: My symptoms last for a whole month. Any advice?
« Reply #10 on: February 23, 2019, 06:54:17 PM »
Hello Simon,
I'm also like you, have no physical symptoms other than urethritis, most of my symptoms are psychological and cognitive.
About having prostatectomy, it's really about your individual choice, I don't have strong opinions about it, but I think that brain symptoms in general can have the potential of being treated without the need of prostatectomy. I say this because while physical symptoms are directly related to inflammation. I don't see traces of any form of brain inflammation in POISers. It is most likely an enzymatic imbalance due to certain Cytokines activity. I'm currently investigating glutamate neurotransmission and NMDA receptors.
If you're willing to due prostatectomy though, probably removing the prostate entirely is the way to go, but remember we only have brain symptoms, so if we can somehow prevent these symptoms, we wouldn't need to deal with infertility and dry ejaculation. I haven't found this solution personally but I believe that it can be achieved.
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Suffering1992

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Re: My symptoms last for a whole month. Any advice?
« Reply #11 on: February 23, 2019, 07:24:29 PM »
Thank you for the response Nas and Demo. love the empathy. But I will say this: I don't care about infertility. I just want to be cured. I just want to attain dry-ejaculations to at least have a 50/50 shot of curing this thing permanently without constant use of meds. If anyone on this thread reads this post - please, I'm literally begging you - if you can find a surgeon or team of surgeons in the states  or the NY area that is willing to perform a prostatectomy for our condition...please hear me out. I have saved enough money with the hope that I can use it for surgery. I am willing to go to great lengths to find a team of doctors to perform it.

Or at least give me any advice to meet such people. I really want to do this. Just tell me how it can be done.
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demografx

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Re: My symptoms last for a whole month. Any advice?
« Reply #12 on: February 23, 2019, 07:28:52 PM »
Su1992, you have my best wishes, whatever you decide.
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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Muon

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Re: My symptoms last for a whole month. Any advice?
« Reply #13 on: February 23, 2019, 07:29:05 PM »
I would first try immunotherapy before considering extremely invasive surgery.
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demografx

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Re: My symptoms last for a whole month. Any advice?
« Reply #14 on: February 23, 2019, 07:49:40 PM »
Thanks, Muon.
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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Suffering1992

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Re: My symptoms last for a whole month. Any advice?
« Reply #15 on: February 23, 2019, 08:16:40 PM »
Would there be any surgeons that any of you know of that would be willing to perform the procedure for the purposes of our condition?
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Muon

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Re: My symptoms last for a whole month. Any advice?
« Reply #16 on: February 23, 2019, 08:24:25 PM »
Why not try a less invasive option like immunotherapy first?
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Suffering1992

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Re: My symptoms last for a whole month. Any advice?
« Reply #17 on: February 23, 2019, 08:31:54 PM »
I wouldn't even know where to go to do it. If you know any doctors please enlighten.
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Muon

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Re: My symptoms last for a whole month. Any advice?
« Reply #18 on: February 23, 2019, 08:40:50 PM »
Quote from: Suffering1992 on February 23, 2019, 08:31:54 PM
I wouldn't even know where to go to do it. If you know any doctors please enlighten.
Look for an Allergologist who is willing to do this, show him/her these papers for ILIT or SCIT:
https://www.sciencedirect.com/science/article/pii/S2050116118300199
https://www.ncbi.nlm.nih.gov/pubmed/21241454
There is no guarantee it will work though. ILIT could be a faster method than SCIT.
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Suffering1992

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Re: My symptoms last for a whole month. Any advice?
« Reply #19 on: February 23, 2019, 08:54:51 PM »
Forget faster. Which works better. Also, since my symptoms are only mental / neurological...then doesn't that mean that maybe it's not an allergy in my case? how do you know it would work for my 'type' of POIS?
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