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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6437661 times)

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16800 on: 17/06/2012 15:07:36 »
Hi Kurtosis, at least I'm 100% sure that vitamin C is causing some anxiety (very severe if I persist) in my case, so there is definitely a reason. I was also reporting I have not always been like that, it took months after starting the supplement in high doses. I'm ok (or borderline) with 180mg/day + multivit/min. I feel good with one or two glass of orange juice daily and even feel the need to drink more of it after orgasm.
About the depletions I have read this before the internet, from a book written by a scientist from the CNRS (french national center for scientific research) but I know it can be wrong that's why I wrote "could deplete" (is it the conditionnal, not sure  with my english). I agree with you, a lot of studies are biased.
Empirically, magnesium is what was helping me the most with this side effect but taking it regularly was not enough so I had to reduce vitamin C.
I don't believe it's easy to make a diagnosis since blood levels can be normal even with a deficiency.
I never had any problem with GC (or you) reporting his success with vitamin C or with anything before. I'm glad he did it. I'm just reporting my own experience just in case it can help someone with the same issue.
Not aware of this I would have been forced to take a medication.
 

Offline nathan123

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16801 on: 17/06/2012 15:22:23 »
Hi,  today I got my vitamin D level blood test.  My V D level is 2 whereas normal range is 30 to 70.  I am in severe deficient of Vit D. does Vit D has any link with auto immune diseases?
 

Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16802 on: 17/06/2012 15:49:17 »
Hi Kurtosis, at least I'm 100% sure that vitamin C is causing some anxiety (very severe if I persist) in my case, so there is definitely a reason. I was also reporting I have not always been like that, it took months after starting the supplement in high doses. I'm ok (or borderline) with 180mg/day + multivit/min. I feel good with one or two glass of orange juice daily and even feel the need to drink more of it after orgasm.
About the depletions I have read this before the internet, from a book written by a scientist from the CNRS (french national center for scientific research) but I know it can be wrong that's why I wrote "could deplete" (is it the conditionnal, not sure  with my english). I agree with you, a lot of studies are biased.
Empirically, magnesium is what was helping me the most with this side effect but taking it regularly was not enough so I had to reduce vitamin C.
I don't believe it's easy to make a diagnosis since blood levels can be normal even with a deficiency.
I never had any problem with GC (or you) reporting his success with vitamin C or with anything before. I'm glad he did it. I'm just reporting my own experience just in case it can help someone with the same issue.
Not aware of this I would have been forced to take a medication.
Hi Martin. I've no problem with you either :) Just commenting on vitamin c benefits and problems. Linus Pauling's legacy is that vitamin C research is still quite polarised with interpretations of results that are often more dramatic than the experiments would suggest.
Magnesium would certainly help with anxiety but, as you say, determining a magnesium deficiency would be difficult and there are other possible causes of anxiety.
How were you supplementing vitamin C? Effervescent tablets / pills ?
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16803 on: 17/06/2012 20:15:33 »
Kurtosis,
Initially I was taking effervescent tablets during months but I have a problem with all other high doses of vitamin C including from food, this could be a result of an imbalance caused by the tabs. However the symptoms take longer (1-3 days vs 1-2 weeks) to appear with food or with ester-C. 
« Last Edit: 17/06/2012 21:41:29 by martin88 »
 

Offline Hoping

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16804 on: 18/06/2012 04:04:37 »
I want to keep on topic to pois, which the sexual excitement/release causes us to use up a reserve supply of chemicals and loose nutrients. 
When this interesting theory was discussed some POIS sufferers said they could have an orgasm without ejaculation followed by POIS. Then we supposed they could have retrograde ejaculation (ejaculation in the bladder). Retrograde ejaculation can be easily diagnosed by checking urine for sperm content with a microscope. Too bad I can't have a dry orgasm to test this. Here is a video showing an excellent view of swimming sperm through a low priced microscope (intended for fertility tests at home):

Id love to try something like a meyer cocktail
That's almost what desensitization with undiluted sperm is.

About the allergy theory
(Important: this injection should be done under medical supervision to prevent serious and potentially fatal side effect like anaphylactic shock) :
Did someone tried to do an injection directly with a small amount of undiluted sperm, without trying with dilutions before?
This should give you a full POIS episode if the theory is true.
Martin88, I received an intradermal test of undiluted semen from Dr. Betwra and Dr. Nguyen at Creighton University in March 2011. I has hit hard by POIS symptoms after the test. As I stated in my post describing the test experience, "...I received the p-r-i-c-k test as well as the intradermal injection tests since I wasn't entirely clear on which to ask for (Waldinger's study refers to "intracaneous injections" but calls it a p-r-i-c-k test.) Dr. Nguyen did not dilute the semen as Waldinger specified. The p-r-i-c-k tests showed a slight reaction (about 3x3mm wheal and erythema and a 5x5mm wheal and erythema). The intradermal reactions were huge. It was 25x30mm wheal and erythema and 15x30mm wheal and erythema. Waldinger says in his study that wheal and erythema less than 5mm is negative. (For those who don't know, the "wheal" is the red bump that appears and the "erythema" is the flaring out rash that surrounds the wheal. Measuring these two components gets the numbers I mentioned above). It's interesting to note that after the testing, I was hit by a bout of POIS fatigue and brain fog very quickly. Normally my POIS lingers for around 10 days. This time the symptoms hit me quick and hard. I fell into a deep sleep for an hour which helped symptoms. They didn't linger too badly."
 

Offline B_Daniel

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16805 on: 18/06/2012 06:30:18 »
Just a quick note on B12, I had an only partially succesful niacin treatment a few days ago, and I decided to go get some B12.  I could only find sublingual methods, but I took a 5000 mcg tablet and nothing happened.  After a couple hours I took another.  This was not good, as I felt pretty crappy after taking the second one. 

Nightingale - Thank you for sharing your experience with B12.  It's incredibly helpful to know that that didn't work for you.  We've got to start being more open about our successes AND failures.
 

Offline B_Daniel

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16806 on: 18/06/2012 06:42:27 »
There's been a lot of success with Niacin. 

Is there anyone with Constant POIS that has found success with Niacin?

Has anyone with Constant POIS found ANY good treatment for the "constant" part of the POIS?
 

Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16807 on: 18/06/2012 09:03:57 »
Just a quick note on B12, I had an only partially succesful niacin treatment a few days ago, and I decided to go get some B12.  I could only find sublingual methods, but I took a 5000 mcg tablet and nothing happened.  After a couple hours I took another.  This was not good, as I felt pretty crappy after taking the second one. 

Nightingale - Thank you for sharing your experience with B12.  It's incredibly helpful to know that that didn't work for you.  We've got to start being more open about our successes AND failures.
5000 mcg is a very big dose. It's unlikely that you'd feel better immediately as that's not how b12 works and you can't store all of that 5000mcg in your body. 

A few internet searches could confirm this but I remember that my relatives who started treatment were told it could take a few weeks to notice an improvement. When injections then they can be given every day (or 2nd day) for the first few weeks. Levels are monitored after that and follow on injections are given. It's completely different to something like niacin where you get an instant response with a flush.

Perhaps you could go to your doctor and get tested. If you do, please make your doctor aware of http://www.pernicious-anaemia-society.org/phpbb/viewtopic.php?f=6&t=13024&p=56002
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16808 on: 18/06/2012 09:59:23 »
GoingGrazy was taking C with salt (sodium chloride) giving it a sodium ion to bind to when excreted. It appears unlikely he's suffer from depletion of other trace minerals but without regular blood tests we wouldn't know. I don't think there's any studies showing that anxiety is caused by high dose vitamin C this but he doesn't seem to be suffering from anxiety symptoms. Actually, in my experience I feel it decreases anxiety. Like a mild SSRI.

Just to let members know that yes I did take that vitamin C/Sea salt regimen for a little more than 3 weeks and have since taken the salt out of the regimen, and now I am just continuing on the vitamin C, 500 mg daily.  Not sure if I even need to take it but I feel like it may have a benefit.  Just posting this to make sure others know that I am no longer on the sea salt.
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16809 on: 18/06/2012 13:22:50 »
Martin88, I received an intradermal test of undiluted semen from Dr. Betwra and Dr. Nguyen at Creighton University in March 2011. I has hit hard by POIS symptoms after the test. As I stated in my post describing the test experience, "...I received the p-r-i-c-k test as well as the intradermal injection tests since I wasn't entirely clear on which to ask for (Waldinger's study refers to "intracaneous injections" but calls it a p-r-i-c-k test.) Dr. Nguyen did not dilute the semen as Waldinger specified. The p-r-i-c-k tests showed a slight reaction (about 3x3mm wheal and erythema and a 5x5mm wheal and erythema). The intradermal reactions were huge. It was 25x30mm wheal and erythema and 15x30mm wheal and erythema. Waldinger says in his study that wheal and erythema less than 5mm is negative. (For those who don't know, the "wheal" is the red bump that appears and the "erythema" is the flaring out rash that surrounds the wheal. Measuring these two components gets the numbers I mentioned above). It's interesting to note that after the testing, I was hit by a bout of POIS fatigue and brain fog very quickly. Normally my POIS lingers for around 10 days. This time the symptoms hit me quick and hard. I fell into a deep sleep for an hour which helped symptoms. They didn't linger too badly."
Thank you Hoping, this is a great report. I remember you had POIS symptoms after the injection but I completely missed it was with undiluted semen.
I suppose your blood was exposed to semen and you didn't have your usual 10 days of POIS with the usual day 2 aggravation (or you had it?, do you have it in POIS usually?) caused by the type IV allergy. I don't want to make conclusions but whatever it is there is something very interesting here. That could mean we need to be continuously exposed to semen to feel POIS for ten days, or that POIS is not caused by an allergy, or something else..

If everybody, including non POIS sufferers, is allergic to his own semen like Dr Betwra said (I think he said that), the erythema is normal. (Well, at least the 20% of POIS sufferers who don't have the reaction are not allergic, unless a prik test result can be a false negative..)

I heard that an injection can cause fatigue, I don't know if it could eventually reactivate POIS symptoms without the allergy involved. Some people report fatigue and fever after a saline injection:
http://answers.yahoo.com/question/index?qid=20081109190208AA5VSaL
(It's hard to believe it's a placebo effect like the author is writing).
Other websites report a febrile state after a saline injection.
« Last Edit: 18/06/2012 13:34:35 by martin88 »
 

Offline Habibou

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16810 on: 18/06/2012 17:38:08 »
There's been a lot of success with Niacin. 

Is there anyone with Constant POIS that has found success with Niacin?

Has anyone with Constant POIS found ANY good treatment for the "constant" part of the POIS?
I am in the same case and nothing really worked for me to delete the constant POIS/CFS !
 

Offline Stef

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16811 on: 18/06/2012 20:30:38 »
Hi,  today I got my vitamin D level blood test.  My V D level is 2 whereas normal range is 30 to 70.  I am in severe deficient of Vit D. does Vit D has any link with auto immune diseases?
Nathan 123,

Your Vit D level is severely low!!

Do you know what specific Vit D test was performed? Was it the 25(OH)D test?  This is the most accurate test for Vit D deficiency, so please ask your doctor which test was done.

What does your doctor think is causing this serious deficiency, and what do you need to do to correct it?

Stef

 

Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16812 on: 18/06/2012 20:35:58 »
GoingGrazy was taking C with salt (sodium chloride) giving it a sodium ion to bind to when excreted. It appears unlikely he's suffer from depletion of other trace minerals but without regular blood tests we wouldn't know. I don't think there's any studies showing that anxiety is caused by high dose vitamin C this but he doesn't seem to be suffering from anxiety symptoms. Actually, in my experience I feel it decreases anxiety. Like a mild SSRI.

Just to let members know that yes I did take that vitamin C/Sea salt regimen for a little more than 3 weeks and have since taken the salt out of the regimen, and now I am just continuing on the vitamin C, 500 mg daily.  Not sure if I even need to take it but I feel like it may have a benefit.  Just posting this to make sure others know that I am no longer on the sea salt.
Hi GoingCrazy. Has your dose decreased since the salt+C treatment? Can you recap again on what your treatment was. What you took & for how long?
 

Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16813 on: 19/06/2012 00:43:41 »
Hi,  today I got my vitamin D level blood test.  My V D level is 2 whereas normal range is 30 to 70.  I am in severe deficient of Vit D. does Vit D has any link with auto immune diseases?
Nathan 123,

Your Vit D level is severely low!!

Do you know what specific Vit D test was performed? Was it the 25(OH)D test?  This is the most accurate test for Vit D deficiency, so please ask your doctor which test was done.

What does your doctor think is causing this serious deficiency, and what do you need to do to correct it?

Stef


my D3 was low last year when I had it checked, the level was 28.  I had my physician prescribe me vitamin D2 50,000IU once a week for 6 weeks.  After two doses the med made me feel weird and anxious and I had to stop taking it.  I have tried to start vitamin D3 regiments about 5 or 6 times with over the counter supplements on my own and the same side effects always start to happen after a few days. 
 

Offline POIS-SUFFERER

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I have been following this forum for around 2 years and suffering from POIS for maybe 10 year.

What everyone talks about on here is exactly how I feel..... however.....

I have been taking a drug called ATIVAN for just as long (10 years) and I have now just discovered how this drug has messed up my life, its a very long story, but it seems to be VERY connected with my POIS. Hundred of thousands of people are now affected and realizing the issues with such drugs.

Now I am not saying people with POIS are addicated to this drug (or 20 others similar to it) but this drug affects the central nervous system (CNS), and replaces the normal messaging of your nerves with its own version of messaging, and hence the issues it creates for the users of the drug..... (related to GABA)

So maybe POIS is related to the nervous system and your nerve messaging setup.... lots of other drugs/diseases can interfere with the same system.

Basically what I think now with me is an O is so intense on the nervous system it throws it all into disarray, causing all sorts of symptoms, also with me too much excitement does the same, to much physical exercise same thing, and others here with POIS report the same. Yes and of course brain fog and all the other issues are all part of it.

I think some of you should read and look into this and see if you can draw any similarities. Its a lot of reading, but I think it might be worth it.

To get started here are some links:
http://en.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome
http://www.bcnc.org.uk/symptoms.html
http://www.benzobuddies.org (I think you need an account to search this one, worth it, has tonnes of people taking about there situations and MANY sounds like POIS!)
   
I hope some of you can dig deep on this and see where it goes!

Thanks!
PS.
 

Offline Nightingale

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16815 on: 19/06/2012 17:13:15 »
I can hardly contain myself:  this allergist I saw almost a year ago just contacted me this morning after "reading an article in a magazine (I don't know which one yet) that described exactly what you were complaining about."  She contacted someone at the University of Virginia, just two hours away, and found out there was someone "very interested" in seeing me!  I know for sure that they talked about performing a pin ***** test, as that is what I was trying to do at my allergists but they did not have the equipment to perform it like Dr. Waldinger does for diagnosis.

I'm waiting to hear back on an appointment time at the university, and I'll try to find out what "magazine" this was that made it to my allergist's hands!

Keep up the hope  ;D ;D ;D ;D ;D ;D ;D ;D ;D
 

Offline Hoping

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16816 on: 20/06/2012 14:14:23 »
I can hardly contain myself:  this allergist I saw almost a year ago just contacted me this morning after "reading an article in a magazine (I don't know which one yet) that described exactly what you were complaining about."  She contacted someone at the University of Virginia, just two hours away, and found out there was someone "very interested" in seeing me!  I know for sure that they talked about performing a pin ***** test, as that is what I was trying to do at my allergists but they did not have the equipment to perform it like Dr. Waldinger does for diagnosis.

I'm waiting to hear back on an appointment time at the university, and I'll try to find out what "magazine" this was that made it to my allergist's hands!

Keep up the hope  ;D ;D ;D ;D ;D ;D ;D ;D ;D

Great news Nightingale! Be sure to request an intradermal test in addition to (or instead of) the p-rick test. Waldinger describes "intracaneous injections" (AKA intradermal test) but refers to them as p-rick test in his paper. A p-rick test is just that -- a small skin p-rick with the allergen. In an intradermal test, the allergen is physically injected with a syringe just below the skin.
 

Offline eur79m

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16817 on: 20/06/2012 17:06:12 »
There's been a lot of success with Niacin. 

Is there anyone with Constant POIS that has found success with Niacin?

Has anyone with Constant POIS found ANY good treatment for the "constant" part of the POIS?

NONE... I only took it a couple of times and stopped since I had lower abdominal pain and did not want to harm my liver. But the pain was unrelated, liver checked out fine, pain unrelated, will try again but low hopes since beside the flush no other effect. Tried both niacin and XN in different doses.

Constant POIS since June 2010... more on my condition in my next post.
« Last Edit: 20/06/2012 17:52:23 by eur79m »
 

Offline eur79m

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16818 on: 21/06/2012 00:55:10 »
I am fed up with the medical system!

I have a valid theory what causes my particular symptoms and have proposed reasonable diagnostic procedures to test the validity of my theory.

Still, each and every doc at my local university hospital is trying to get rid of me by suggesting psychological remedies to obviously physical causes. Everything I present, facts, cause - effect relationships, correlations, references to everything you have collected in this forum so far, is generously waved away and ignored. Everybody I have met so far is too afraid to try anything new that might cause negative side effects or can be seen as a major intervention, even if I declare to bear any related costs and waving any doc/hospital liabilities. In the medical system my right to self-determination is taken away and I declared incompetent at the whim of the gods in white...

Lets start at the beginning... as I described in previous posts, my case is slightly different from the majority of the cases I read about so far, in that my POIS symptoms started together with pain in my right testicle, following what I believe was a  physical trauma of my right testicle I sustained during a spinning class (indoor cycling, balls squeezed on a hard saddle). I did have surgery (based on a wrong diagnosis) and two day relief after the surgery... until my first post-surgery ejaculation (see previous posts). Since then I am in constant POIS with right testicle pain, severity of both depending on sexual activity (always on a scale between 'bad' and 'worse').

I learned about POIS but did not know what to do about it, educated myself, and suffered throughout the last year... Only at the beginning of 2012 did I have the courage to make an appointment at my local university hospital. I specifically asked to talk to an immunologist but had to see a hospital GP first. I presented all the research you collected (waldinger everything else I could find), had all the usual tests done, including a p r i c k test with my own semen and a spermiogram. Basically all without any real results (as expected), Vitamin D deficiency, no allergy to my semen, spermiogram not great but something still seems to be alive.

My theory:
I have suffered a physical trauma to my right testicle through which immune cells gained access to the testicular microenvironment. Thus, the immune privilege might be broken and immune responses no longer suppressed. I came up with the suggestion to test this by pharmacological suppressing my immune system, just as it is for example done with transplant patients to prevent foreign tissue from being rejected. I dug up this seemingly unrelated info ( newbielink:http://en.wikipedia.org/wiki/Sympathetic_ophthalmia [nonactive]) about a rare eye disease, the eye also being an immune privileged site. Interestingly the preferred treatment is immunosuppressive therapy... Digging around a bit in medical literature I downloaded some bits and pieces from Google books, which you can find at the following location: newbielink:http://min.us/myITMUQnQ [nonactive]
Most of the pages will not be relevant to you but have a look at diseases_1.jpg. The table is an excerpt from a 1993 paper of Rose/Bona, modifying something called "Witebsky's postulates". I did not get access to the 1993 paper (30USD) but the Witebsky criteria have to be met for a diseases to be classified as an autoimmune disease. I am not sure about the generally accepted status of POIS, is it actually classified as an autoimmune disease?! If so, on what basis? The evidence that has to be met according to the table is rather difficult to gather and it might not happen during our lifetime... BUT Level 3.6: RESPONSIVENESS TO IMMUNOSUPPRESSION !!! There it is again, and to me it is perfectly logical and just makes sense. I believe my symptoms to be autoimmune related, if this is indeed the case, symptoms should be diminished / vanish if the immune system is somehow suppressed.

Still I was not allowed an appointment with an immunologist before seeing a specialist for psychosomatic medicine / sexual therapy. The Prof completely ignored any facts I presented, alluded to my anxiety (very surprising after two years of continued POIS suffering) and proposed the usual psych therapy including SSRI's etc. I left after the second session. Being finally granted an appointment with the immunologist after five months, he also was very reluctant to pursue the immunosuppression route. I had to listen to numerous arguments why not to do it, how dangerous it is, sideffects etc (not that millions of transplant patients worldwide are living under immunosuppression, immunosuppression being indicated for several autoimmune diseases), that we would not gain anything from this exercise since I cant live my whole life with my immune system being knocked out (Knowledge gained?! Understanding of the POIS mechanism?), and the best one, that he could give me only 1/100th of the dose that would be indicated for eg the special eye case since I dont have anything SERIOUS!!!  :o In order to get rid of me, to postpone decisions, and not to take any risks on his side, he sent me to urology again to take a biopsy of my right testicle to look for the infiltration of any inflammatory cells, which would support my theory. Four weeks later I had the appointment, the evening before I had some ejaculations to be sure to be in worst POIS state when the procedure was performed. The doc (he did not see me before) arrived 15min late, that was the time it took him to read up on my file. You can be sure that he never heard of POIS before, did not read a single paper on the topic and my file was the first time he was confronted with any of this... still the first thing he could tell me for sure when he entered was that POIS does not exist. Usual procedure of ignoring my arguments, using my POIS state against me by telling me what a clear case for a psychologist I am ("dont worry, in the US everybody has a shrink!") and that I should just IGNORE my symptoms! He refused to do the biopsy (probably for the better, its quite an invasive procedure that I rather go without) and sent me home with a prescription for Voltaren :o ... what a joke, never met anybody as prejudiced and arrogant as this guy.

So here I am... tomorrow I have a call with the immunologist again, I will try to make an appointment to start a diagnostic immunosuppression but the answer I will get is pretty clear, he will refuse to do it...

My problem is I cant go on living like this, I am almost unable to work, the way I feel EVERY morning you would normally not even get out of bed and just call in sick... I would like confirmation or rejection of my autoimmune theory based on facts so I can make an informed decision on how to continue... but most likely I will even be denied my diagnostic proposal. Most likely I will be denied any further help in this developed medical system and might be forced to seek help outside... like animus did.

Any suggestions, feedback, options?
« Last Edit: 21/06/2012 01:30:20 by eur79m »
 

Offline eur79m

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16819 on: 21/06/2012 01:07:14 »
Just a quick follow-up, forgot to mention that there actually is something called 'autoimmune orchitis' which is an autoimmune inflammation of a testicle:
newbielink:http://www.ncbi.nlm.nih.gov/pubmed/21842235 [nonactive]
newbielink:http://autoimmune.pathology.jhmi.edu/diseases.cfm?systemID=3&DiseaseID=20 [nonactive]
newbielink:http://www.preservearticles.com/2012032028162/what-is-autoimmune-orchitis.html [nonactive]

Not directly relevant to you but I believe that this is the cause of / related to my POIS...
Interestingly one of the articles mentions 'testicular atrophy', a shrinking of the testicle. The urologist told me that mine are 'smaller than usual' but that doesnt mean anything... certainly not in connection with my autoimmune hypothesis *sarcasm off* ... Autoimmune orchitis was never mentioned during the talk with the urologist, however he seemed to have a lot of knowledge in the psychological field *some more sarcasm* ...
 

Offline Starsky

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16820 on: 21/06/2012 08:14:01 »
What about testosterone treatment, if nothing really works you could go for the Animus solution.
 

Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16821 on: 21/06/2012 09:35:05 »

My theory:
I have suffered a physical trauma to my right testicle through which immune cells gained access to the testicular microenvironment. Thus, the immune privilege might be broken and immune responses no longer suppressed. I came up with the suggestion to test this by pharmacological suppressing my immune system, just as it is for example done with transplant patients to prevent foreign tissue from being rejected. I dug up this seemingly unrelated info (http://en.wikipedia.org/wiki/Sympathetic_ophthalmia) about a rare eye disease, the eye also being an immune privileged site. Interestingly the preferred treatment is immunosuppressive therapy... Digging around a bit in medical literature I downloaded some bits and pieces from Google books, which you can find at the following location: http://min.us/myITMUQnQ
Most of the pages will not be relevant to you but have a look at diseases_1.jpg. The table is an excerpt from a 1993 paper of Rose/Bona, modifying something called "Witebsky's postulates". I did not get access to the 1993 paper (30USD) but the Witebsky criteria have to be met for a diseases to be classified as an autoimmune disease. I am not sure about the generally accepted status of POIS, is it actually classified as an autoimmune disease?! If so, on what basis? The evidence that has to be met according to the table is rather difficult to gather and it might not happen during our lifetime... BUT Level 3.6: RESPONSIVENESS TO IMMUNOSUPPRESSION !!! There it is again, and to me it is perfectly logical and just makes sense. I believe my symptoms to be autoimmune related, if this is indeed the case, symptoms should be diminished / vanish if the immune system is somehow suppressed.

Still I was not allowed an appointment with an immunologist before seeing a specialist for psychosomatic medicine / sexual therapy. The Prof completely ignored any facts I presented, alluded to my anxiety (very surprising after two years of continued POIS suffering) and proposed the usual psych therapy including SSRI's etc. I left after the second session. Being finally granted an appointment with the immunologist after five months, he also was very reluctant to pursue the immunosuppression route. I had to listen to numerous arguments why not to do it, how dangerous it is, sideffects etc (not that millions of transplant patients worldwide are living under immunosuppression, immunosuppression being indicated for several autoimmune diseases), that we would not gain anything from this exercise since I cant live my whole life with my immune system being knocked out (Knowledge gained?! Understanding of the POIS mechanism?), and the best one, that he could give me only 1/100th of the dose that would be indicated for eg the special eye case since I dont have anything SERIOUS!!!  :o In order to get rid of me, to postpone decisions, and not to take any risks on his side, he sent me to urology again to take a biopsy of my right testicle to look for the infiltration of any inflammatory cells, which would support my theory. Four weeks later I had the appointment, the evening before I had some ejaculations to be sure to be in worst POIS state when the procedure was performed. The doc (he did not see me before) arrived 15min late, that was the time it took him to read up on my file. You can be sure that he never heard of POIS before, did not read a single paper on the topic and my file was the first time he was confronted with any of this... still the first thing he could tell me for sure when he entered was that POIS does not exist. Usual procedure of ignoring my arguments, using my POIS state against me by telling me what a clear case for a psychologist I am ("dont worry, in the US everybody has a shrink!") and that I should just IGNORE my symptoms! He refused to do the biopsy (probably for the better, its quite an invasive procedure that I rather go without) and sent me home with a prescription for Voltaren :o ... what a joke, never met anybody as prejudiced and arrogant as this guy.

So here I am... tomorrow I have a call with the immunologist again, I will try to make an appointment to start a diagnostic immunosuppression but the answer I will get is pretty clear, he will refuse to do it...

My problem is I cant go on living like this, I am almost unable to work, the way I feel EVERY morning you would normally not even get out of bed and just call in sick... I would like confirmation or rejection of my autoimmune theory based on facts so I can make an informed decision on how to continue... but most likely I will even be denied my diagnostic proposal. Most likely I will be denied any further help in this developed medical system and might be forced to seek help outside... like animus did.

Any suggestions, feedback, options?
I empathise with your troubles with the medical profession. I think everyone here has been told at one stage or another they're suffering from an anxiety disorder. It's a self-confirming diagnosis and anything you do to fight it just convinces the "expert" making it that you're anxiety and obsessive.

Whatever the reason for the POIS reaction, it's interesting to consider what treatments have "cured" POIS in the few people on the forum who have reported dramatically improved conditions. For example, testosterone therapy could make sense in the context of an autoimmune disease.  Read http://www.sciencedaily.com/releases/1999/10/991007083730.htm
 

Offline Omen 30

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16822 on: 21/06/2012 12:11:36 »
Abstinence is causing stress and anxiety in me,which in turn is giving me heavy brain fog...strange,pois like symtoms without O or NE...
 

Offline Omen 30

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16823 on: 21/06/2012 12:14:30 »
I think difficulties faced after an Orgasm or a NE are just a signal and the real culprit is something else...maybe some deficiency or maybe obesity or stress etc...
 

Offline observercenter

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16824 on: 21/06/2012 13:09:52 »
I think difficulties faced after an Orgasm or a NE are just a signal and the real culprit is something else...maybe some deficiency or maybe obesity or stress etc...

Hi Omen, this has been reported before. I got mild cognitive problems(they did not affected my mood, but i noticed a minor brain fog) that lasted a few hours -nothing really important- after making an oral presentation in class just few months ago - I made a good, clear presentation but due to the tension my face turned red (I was not the only one who got a red face during the presentation, the heating could have been other factor), and i got very mild cognitive symptoms moments after my presentation ended  . That made me wonder how this event could be related to our POIS...
« Last Edit: 21/06/2012 13:20:50 by observercenter »
 

The Naked Scientists Forum

Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16824 on: 21/06/2012 13:09:52 »

 

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