POIS media coverage megathread

[Muon]

Post/collect (new) videos/articles about POIS from the media.

Videos

Aug 12, 2008: Post Orgasmic Illness Syndrome (person2207 = Girlwind?)

Oct 15, 2009: The Learning Channel's (TLC) feature TV presentation on POIS (POISchannel, featuring: Animus)

Apr 15, 2012: Orgasm: The Trouble with Sex (POIS part) - ABC Documentary (POISchannel, featuring: Waldinger, Meinardi, Observer)

Jan 9, 2019: When Sex Makes You Sick: Post Orgasmic Illness Syndrome (SciShow)

Sep 21, 2019: What is Post Orgasmic Illness Syndrome (POIS)? (El Velero)

Jan 9, 2021: 5.4.2020 Urology COViD Didactics - Disorders of Male Orgasm and Ejaculation

March 10, 2021: Post Orgasmic Illness Syndrome (Have The Balls To Talk About It)

Date?: Post Orgasmic Illness Syndrome POIS - SEX makes you SICK- Is it Post Orgasmic Illness Syndrome POIS? (Dr Deepak Chaturvedi)

June 25, 2022: Are your orgasms making you sick?| Post orgasmic illness syndrome (Rena Malik, M.D.)

July 7, 2022: Post Orgasmic Illness | Dr. Kelkar (MD, MBBS (Dr. Deepak Kelkar)

May 6, 2023: What is post orgasmic illness syndrome and how do you treat it? (ISSM)

July 6, 2023: How I Reversed 95% of my Post-Orgasm-Illness-Syndrome (POIS) Symptoms (Tom Hercules)

July 9, 2023: My 6-Year Journey with Post-Orgasm-Illness-Syndrome (POIS) (Tom Hercules)

July 17, 2023: Dealing with Limitations from Chronic Disease (While You Work Towards a Cure) (Tom Hercules)

July 20, 2023: From Pleasure to Pain. Post-Orgasmic Syndrome (Men's Minds matter)

August 23 2023: POST-ORGASMIC ILLNESS SYNDROME SUCCESSFULLY TREATED WITH OMALIZUMAB (T J)

Nov 27, 2023: Post orgasmic illness syndrome POIS (Erection IQ)

May 4, 2024: Learn about POIS (AUA24) (Dr. Rachel Rubin's instagram)

June 6, 2024: Post Orgasmic Illness Syndrome (POIS) (YT Channel: ChairUrology)

June 22, 2024: Post Orgasmic Illness Syndrome (P.O.I.S) Deuxième Appel : Les Symptômes (Tiger’s Mind: Sans Filtre)

June 24, 2024: Post Orgasmic Illness Syndrome [POIS] (HEALOR, Dr. Raj Singh)

July 4, 2024: my (potentially) lifelong struggle with POIS Post Orgasmic Illness Syndrome (Just Hans)

Media articles

Does my boyfriend have post-orgasmic illness syndrome? (link is dead)

Man's 'debilitating' orgasm allergy left him with flu-like symptoms when he climaxed (link is dead)

2017: Urology news UK: Post-Orgasmic Illness Syndrome

May 22, 2017: Syndrome de la maladie post-orgasmique (Le Monde)

Nov 29, 2017: What It's Like to Be Allergic to Your Own Orgasms

Oct 26, 2019: Post-Ejaculation Illness: Not So Rare After All?

Jan 13, 2020: Syndrome de la maladie post-orgasmique (Le Monde)

May 6, 2024: Post-Orgasmic Illness Syndrome Remains a 'Medical Mystery' (Medpage)

[Muon]

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Reserved Final

[Muon]

What is post orgasmic illness syndrome and how do you treat it?

[Muon]

August 23 2023: POST-ORGASMIC ILLNESS SYNDROME SUCCESSFULLY TREATED WITH OMALIZUMAB (T J)

Use a youtube downloader to download and watch the video.

NSAIDs, high dose antihistamine therapy and SSRIs were considered ineffective.
Treatment: 3 months of therapy with 300 mg Omalizumab every 4 weeks. Patient had improvement of symptoms 3 days after start of therapy. I will add this to the pois paper treatment thread.

https://en.wikipedia.org/wiki/Omalizumab#Mechanism_of_action

[demografx]

August 23 2023: POST-ORGASMIC ILLNESS SYNDROME SUCCESSFULLY TREATED WITH OMALIZUMAB (T J)

…

Thank you. Passed along to POIS Research Teams.

[Quantum]

August 23 2023: POST-ORGASMIC ILLNESS SYNDROME SUCCESSFULLY TREATED WITH OMALIZUMAB (T J)

Use a youtube downloader to download and watch the video.

NSAIDs, high dose antihistamine therapy and SSRIs were considered ineffective.
Treatment: 3 months of therapy with 300 mg Omalizumab every 4 weeks. Patient had improvement of symptoms 3 days after start of therapy. I will add this to the pois paper treatment thread.

https://en.wikipedia.org/wiki/Omalizumab#Mechanism_of_action

Very interesting case report !
Sadly, they do not share how they came to decide to try omalizumab ( Xolair) for POIS.  It is an allergic asthma treatment, and also treats urticaria (hives). The patient's symptoms were nausea and a decline of cognitive functions, starting 5 minutes after O, and his blood tests were normal, so I wonder how the immunology department came to this decision.

Xolair works essentially by depleting free IgE antigens. so that basophils, mast cells, and dendritic cells are gradually down-regulated.  This case report goes in line with the last article of the late Dr. Waldinger, that POIS is an auto-immune disorder.

[Muon]

The reason she tried it is because desensitization works in some cases and antihistamines were ineffective. The high affinity receptors for IgE are downregulated on the cells you mentioned not the cells themselves. Omalizumab is used in MC disorders as mast cell stabilizer when other MC stabilizers fail to be effective. Can we move the discussion to this thread? https://poiscenter.com/forums/index.php?topic=4412.0

[Quantum]

The reason she tried it is because desensitization works in some cases and antihistamines were ineffective. The high affinity receptors for IgE are downregulated on the cells you mentioned not the cells themselves. Omalizumab is used in MC disorders as mast cell stabilizer when other MC stabilizers fail to be effective. Can we move the discussion to this thread? https://poiscenter.com/forums/index.php?topic=4412.0

Ok, thanks.  I just checked and it seems that omalizumab has been used "off label" for MCAS for some time now ( https://pubmed.ncbi.nlm.nih.gov/30954641/ ).   

Muon, you seem to know who "T J" is, and where is here clinic.  Am I right ?

[less_fogged]

August 23 2023: POST-ORGASMIC ILLNESS SYNDROME SUCCESSFULLY TREATED WITH OMALIZUMAB (T J)

Use a youtube downloader to download and watch the video.

NSAIDs, high dose antihistamine therapy and SSRIs were considered ineffective.
Treatment: 3 months of therapy with 300 mg Omalizumab every 4 weeks. Patient had improvement of symptoms 3 days after start of therapy. I will add this to the pois paper treatment thread.

https://en.wikipedia.org/wiki/Omalizumab#Mechanism_of_action

Very interesting case report !
Sadly, they do not share how they came to decide to try omalizumab ( Xolair) for POIS.  It is an allergic asthma treatment, and also treats urticaria (hives). The patient's symptoms were nausea and a decline of cognitive functions, starting 5 minutes after O, and his blood tests were normal, so I wonder how the immunology department came to this decision.

Xolair works essentially by depleting free IgE antigens. so that basophils, mast cells, and dendritic cells are gradually down-regulated.  This case report goes in line with the last article of the late Dr. Waldinger, that POIS is an auto-immune disorder.

Has anyone been able to get hold of the article from the youtube video using omalizumab ( Xolair) for POIS ?
I wish I could test this medication seems promising but expensive.
Used by injections. The standard price for one of these injections costs more that 200euros or even close to about 250euros. Medical healthcare pays most of it back here in my country for those suffering from severe asthma. But if you have POIS then you must pay the full amount!  Part of our problem is that we still don't have a proper diagnoses for POIS.
A Proper diagnoses would be such an advantage and this alone does not seem fair. Many people get help with their illnesses from government, but if you have POIS everything is cut down and often left in the dark with administration. My doctor recognises that I have POIS but can not organise me all the benefits that I'd normally be entitled to get because of these administrative issues with POIS!

[Muon]

Less fogged, could you copy your comment to this thread, we have moved the discussion: https://poiscenter.com/forums/index.php?topic=4412.0

[Muon]

Post orgasmic illness syndrome POIS

27 nov 2023, youtube channel Erection IQ:
In this episode, we're joined by Olivia Paulsen, a third year medical student who is involved in research about post orgasmic illness disorder. Olivia is also an advocate for more open dialog about human sexuality among medical providers and their patients

[demografx]

Post orgasmic illness syndrome POIS

27 nov 2023, youtube channel Erection IQ:
In this episode, we're joined by Olivia Paulsen, a third year medical student who is involved in research about post orgasmic illness disorder. Olivia is also an advocate for more open dialog about human sexuality among medical providers and their patients

Thanks, Muon,

Olivia Paulsen, you may all recall, is our POIS Coordinator for the



University of Chicago
2023 POIS Research Study!

[Gogo]

Hi !

Thank you very much for the link to this article in French. I live in France and would like to contact this urologist via her e-mail address. Did you look for the e-mail address and find it ? If not, I'll give her a call. Have a very good day and lots of courage to all of you in this ordeal that is POIS.

[less_fogged]

Hi !

Thank you very much for the link to this article in French. I live in France and would like to contact this urologist via her e-mail address. Did you look for the e-mail address and find it ? If not, I'll give her a call. Have a very good day and lots of courage to all of you in this ordeal that is POIS.

Hi Gogo,

Sorry I don't have her email.
I noticed this French urologist seems to have been quiet active in publishing her research in her branch and indeed seems like she could be good contact for POISers.

[demografx]

Hi !

Thank you very much for the link to this article in French.

https://www.bienpublic.com/magazine-sante/2023/12/31/orgasme-pourquoi-prendre-du-plaisir-peut-vous-rendre-malade

 I live in France and would like to contact this urologist via her e-mail address. Did you look for the e-mail address and find it ? If not, I'll give her a call. Have a very good day and lots of courage to all of you in this ordeal that is POIS.

Hi Gogo,

Sorry I don't have her email.
I noticed this French urologist seems to have been quiet active in publishing her research in her branch and indeed seems like she could be good contact for POISers.

From Google search:


1. Dr Methorst Charlotte
Chirurgien urologue Saint-Cloud

Contacter ce praticien
3 Place SILLY
92210 Saint-Cloud

2. More Google results (might include email?)

http://tinyurl.com/aycpynt8

[Muon]

May 4, 2024:

Learn about post orgasmic illness syndrome with the brilliant third year medical student @oliviaapaulsen

We are working hard to understand this complex medical problem and need help of as many smart people that we can find.

https://www.instagram.com/drrachelrubin/reel/C6jyvqFADBn/

[demografx]

May 4, 2024:

Learn about post orgasmic illness syndrome with the brilliant third year medical student @oliviaapaulsen

We are working hard to understand this complex medical problem and need help of as many smart people that we can find.

https://www.instagram.com/drrachelrubin/reel/C6jyvqFADBn/

Thanks, Muon, for this nice video showing Olivia Paulsen, who is the Coordinator of our recent involvement with the University of Chicago POIS Study and key MD’s involved in researching POIS!