Post Orgasmic Illness Syndrome (P.O.I.S.)
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| | |-+  Gather and Post Here Your Medical Tests Results - Discussion Thread
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: Gather and Post Here Your Medical Tests Results - Discussion Thread  ( 35064 )
Vandemolen
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« #390 : April 03, 2019, 03:42:41 PM »

Yes, because of putting pressure. It began on testicles and perineal area. But after my last ejaculation the 'sensible area' to pressure has extended to buttocks and lumbar area. And after that I began to have pain also in the SI joint...

Maybe your case is not exactly the same, but would like to know any update. Thank you!
Could it be that your pain is caused by The Pudendal nerve? My problems started 5 years ago. I remember that on a holiday I sat on a bike for 10 hours and at the end of the day I fell hard on my back. Maybe that could be my trigger?

Maybe I have chronic pelvic pain syndrome. The symptoms of patient 2 look like mine.

https://academic.oup.com/ptj/article/90/12/1795/2737819
« : April 03, 2019, 04:42:32 PM Vandemolen »

POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.
Vandemolen
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« #391 : April 05, 2019, 06:06:18 AM »

You don't think that maybe It could be due in some way to POIS?

You think it's more because of something other than POIS? (Infection as you suggest?).

I mean specifically this problem you feel on your SI joint when putting pressure on it?


Please, let me know any update you have when visiting your Doctors about your case.If you don't mind, of course. I am really interested.
My family doctor could not help me. The doctor does not think my symptoms is because of my SI joint. For my joint
I have to go to fysiotherapist. The doctor asked if I had fever. I said I do not think so, but I get really warm. She smiled. I said, but I can see that my neck, ears and chest get very red.

The doctor sended me to an internist. When I listened to the doctor I think she is thinking about somatically insufficient certified physical complaints. In other words she thinks it is something psychological. I do not want to rule anything out. So I made an appointment with a psychosomatic fysiotherapist.
« : April 05, 2019, 08:33:05 AM Vandemolen »

POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.
fernab
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« #392 : April 05, 2019, 11:07:47 AM »

is the story of always with POIS .... quite possibly the internist will end up asking you to go see a psychiatrist. In that case, do not be offended or surprised. because POIS is 'invisible' to doctors ... they will not take you seriously if it turns out that what is happening to you is due to POIS.

It is what happened to me....

Please keep me updated if you don't mind, please!
Vandemolen
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« #393 : April 07, 2019, 10:58:02 AM »

These are my test results for some hormones.

This test is from may 2018. I had not had any kind of emition before this test. I think I was in abstinence like right now:

FSH: 4.53 mUI/ml
LH: 2.97 mUI/ml
Progesterone: 0.19 ng/ml (LOW in men should be between 0.28 and 1.22
Prolactine: 13.70 ng/ml (in my test 13.2 is the upper limit, so seems to be a bit HIGH)
Testosterone: 4.18 ng/ml
Free testosterone: 9.7 pg/ml
Cortisol: 10.74 ug/dl

I found those results. Prolactine included. But all are normal. Except for progesterone that was LOW.

Could that be linked to POIS in any way?
Your testosterone is low. Maybe your non arousal triggers have to do with low testosterone? And your sled accident could have given psychisomatic problems. Maybe you thought it was because of the accident but it was low testosterone?

I also blamed antibiotics for my hot flushes, but I think low testosterone is my problem. I did not eat meat since I was a kid. When I was 18 I started feeling depressed for no reason. My problems became bigger when I stopped doing sports and I gained 20 kg. That must have had a bad effect on my testosterone and maybe also POIS. My POiS became bad in 2010. It was then when I did a bloodtest for testosterone for the first time. It was 11. I has to be above 12.

It is too bad that some people filled in ‘normal’ behind their testosterone level at the blood test topic. Because 12 is also normal, but a bit low. There are men who have normal levels, but they have the symptoms related to low testosterone. On a Dutch website I read that a guy had level 15, but his doctor gave him TRT. He said he felt much better. Described it like he had a different body.

POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.
Nas
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« #394 : April 30, 2019, 07:11:15 PM »

I really wish we had access to brain scans beyond just simple MRI and ECG. Stuff like neuroimaging, a scan with a functional or metabolic sensitivity beyond a simple CT or MRI,  single photon emission computed tomography, etc.
It's so frustrating though when doctors are just not willing to further investigate this illness even though it is ruining most of our lives.
If any has contact with university connected neurologists please either visit them or share their contact information. And please if you have access to it. Do further tests than MRI's or ECG's.
Nas
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« #395 : May 17, 2019, 07:26:58 PM »

I think we have to be cautious when drawing results from a single hormone test at a special time of the day. Hormones levels can fluctuate hugely over 24 hours. When we come out in the daylight cortisol levels skyrock. But that doesnt mean they are normal at night. The same is probably true with testosterone. I took my testerone at ZRT lab and a mean value was calculated on many test points during the day. The most optimal should be to compare 24 hour curves on hormon levels with normal curves.
Regarding this comment, usually the range that is given by the lab is the clinically significant range for illness diagnosis. So yes hormones, especially androgens, fluctuate but the range decides whether it is considerable for therapy or not.
fernab
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« #396 : May 18, 2019, 02:52:06 PM »

I think we have to be cautious when drawing results from a single hormone test at a special time of the day. Hormones levels can fluctuate hugely over 24 hours. When we come out in the daylight cortisol levels skyrock. But that doesnt mean they are normal at night. The same is probably true with testosterone. I took my testerone at ZRT lab and a mean value was calculated on many test points during the day. The most optimal should be to compare 24 hour curves on hormon levels with normal curves.
I moved your post here. Since this is the correct thread to discuss any result in the other thread...
fernab
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« #397 : May 18, 2019, 02:54:17 PM »

Thank you BoneBroth!!!

Very interesting information!!!
Vandemolen
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« #398 : June 20, 2019, 09:05:18 PM »

I had a new blood test because of low testosterone. My free testosterone dropped a bit more, but still in the normal range. I am seeing an urologist about two weeks.

Testosterone: 11. RR: 10-30
Free testosterone: 280. RR: 174-729
SHBG: 21. RR: 13-71
LH: 2.0. RR: 1.5-9.3
FSH: 3.3. RR: 1.4-18.

POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.
Muon
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« #399 : June 21, 2019, 11:28:06 AM »

We should take a look at unique mediators of eosinophils to rule out activation of these cells. They play a role in non-IgE mediated allergies. Since a bunch of members are hypersensitive to food as well, it might be relevant to test these mediators.
Muon
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« #400 : July 04, 2019, 09:35:11 AM »

I've checked my cortisol level. It shows a normal result.
Muon
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« #401 : July 19, 2019, 08:00:59 AM »

Thank you for the serum immunoglobulin free light chain update Simon. Do you know whether you have done this while symptomatic? Disease/symptom severity is related to serum levels. It has a half life of around 6 hours I believe. It's probably unlikely that these are involved in POIS considering your data.
https://poiscenter.com/forums/index.php?topic=2684.msg24995#msg24995
BoneBroth
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« #402 : July 22, 2019, 12:27:44 PM »

Did a hormone-chart-test on a Bicom bioresonance machine today (7 days after NE-POIS).

Positive reaction (means I need more of theese):
- Cortisol
- Estradiol
- Noradrenaline
- Parathormon
- T3
- Substance P
- "Correcting hormonal inbalances"

Negative reaction (means I need less of theese)
- Tourine

« : July 23, 2019, 05:51:22 AM BoneBroth »

Frequency analysis techniques (like QRMA) has been invaluable in the evaluation of my body's condition and treatment. It's freaking Star Trek man! Make a test and put your results here if If you can!
Muon
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« #403 : July 22, 2019, 01:13:46 PM »

Did a hormone-chart-test on a Bicom bioresonance machine, 7 days after POIS (NE).

Positive reaction (means I need more of theese):
- Cortisol
- Estradiol
- Noradrenaline
- Parathormon
- T3
- Supstance P

Negative reaction (means I need less of theese)
- Tourine

I don't take these measurements seriously. It's pseudo science in my eyes.
BoneBroth
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« #404 : July 22, 2019, 03:29:50 PM »

Sadly to say, but with that ridiculed attitude (demografix making-fun-of-alternative-medicin image), I suddenly realise three things:

1. If those comments by any means reflects the major driving forces in this forum, the prospects for an advancement in the search for a POIS cure here, for me suddenly seems hopelessly far away.
2. If the tentacles of Big Pharma (wich are recognized by such inscientific outbursts), as with almost all other disease-associations, also reaches inside this still free-thinking forum, you can all kiss the POIS-hope goodbye forever, just like with cancer, arteriosclerosis and all other endemic diseases that has become a "business with disease", rather then a genuine field of research for a cure (which, by the way, has been around for a long time, if not ever).
3. I might rethink spending time here, bouncing ideas and sharing my results open heartedly for everyone's common interest.

Please, at least keep such comments, if you really need them, in a separate thread.

"We cannot solve our problems with the same thinking we used when we created them." - Albert Einstein

Update 2019-07-23: I see that demografix image is obviously removed
« : July 23, 2019, 05:55:29 AM BoneBroth »

Frequency analysis techniques (like QRMA) has been invaluable in the evaluation of my body's condition and treatment. It's freaking Star Trek man! Make a test and put your results here if If you can!
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