Equal Parts Derogatory Dismissal and Powerless Exasperation
*Postorgasmic illness syndrome
Equal Parts Derogatory Dismissal and Powerless Exasperation
A primary care physician’s private, back-office comment, best characterized by the statement above, was the one and only professional exposure I’ve had to Postorgasmic illness syndrome. Now, many years later, as I read the scientific research to date, I can better understand the doctor’s expression of powerless exasperation. I imagine that for sufferers of Postorgasmic illness syndrome, the lack of action, at every level, is devastating. I’m in the process of completing a Diagnosis Description for Postorgasmic illness syndrome here. For new readers, these Diagnosis Descriptions are part of a sub-newsletter where I catalog evidence-based information for individual autoimmune disorders. It’s a work in progress. Perhaps the most useful parts of the Diagnosis Description for Postorgasmic illness syndrome are the sections on research authors and research institutions. These are the physician scientists who have taken an interest in studying and writing about Postorgasmic illness syndrome. It’s possible that if they could amass enough study participants, they would be willing to study this condition in greater depth.
What is Postorgasmic illness syndrome?
The Genetic and Rare Diseases Information Center through the National Institutes of Health defines it this way:
Postorgasmic illness syndrome (POIS) is a rare condition in which a person develops flu-like and allergy symptoms after orgasm, whether with a partner, through masturbation, or spontaneously during sleep. POIS typically is reported in males (after ejaculation), but females have rarely been reported to have symptoms of POIS. Symptoms may develop within seconds, minutes, or hours after orgasm, and usually last for 2 to 7 days before going away on their own. Possible symptoms vary from person to person, but more common symptoms include fatigue, weakness, headache, fever, mood changes, memory or concentration problems, stuffy nose, sore throat, and itching eyes. The underlying cause of POIS is not known. Some scientists believe that in men, it is an autoimmune or allergic disorder that causes an inflammatory reaction to a substance in a man's own semen. Others have proposed POIS may be caused by a chemical imbalance in the brain. POIS can cause severe distress in people with the condition and their partners. Some people with POIS abstain from sexual activity or find that they need to schedule sex for a time when they can cope with the symptoms.
(Genetic and Rare Diseases Information Center, 2023)
The Genetic and Rare Diseases Information Center estimates that fewer than 1,000 people in the U.S. have this disease. I couldn’t find a source for their estimate of how many people are affected, and no research I’ve read to date even attempted to guess at a prevalence rate.
Is It Autoimmune?
Binary classifications between auto inflammation and autoimmunity are so temptingly simple. Symptom descriptions and a few of the handful of treatments described in the literature suggest that Postorgasmic illness syndrome is auto-inflammatory, but given the complex interplay between auto inflammation and autoimmunity, and the lack of comprehensive research into the mechanisms of this disease particularly, it’s well worth adding Postorgasmic illness syndrome to my comprehensive List of Autoimmune Disorders. I do indicate with an asterisk that it’s suspected autoimmune, as opposed to known autoimmune.
Inflammatory/Autoimmune Theories of Disease Mechanisms
For the few studies that have been done on small sample populations, the pathological picture is contradictory. I’m going to fully own my bias here, and let readers know that I’m not interested in evaluating proposed psychological causes of disease that appear in the literature. In the Diagnosis Description for Postorgasmic illness syndrome, I include a chart from a review article that lists a 2020 case report of Postorgasmic illness syndrome possibly caused by a psychological disorder and treated with immunotherapy. I found the abstract to be a dead end for elucidating this syndrome, so I will not be including a link, but I think I’ve given enough information for readers to find it if you are interested in exploring possible psychological factors.
There are also several proposed disease mechanisms that fall outside of the scope of a newsletter on autoimmune disease (opiate receptor disruptions, testosterone deficiency, disruptions in the balance of the fight or flight systems of the body, and a fascinating theoretical proposal for disease-causing mechanisms in Postorgasmic illness syndrome based on another theoretical proposal for the cause of Delayed onset muscle soreness (micro-injuries and repetitive re-injuries to specialized muscle fibers)). And I want to clarify that these body systems have the potential to be affected by autoimmunity, but to explore them, instead of autoimmunity, as the main driver of the disease process, is outside of the scope of this newsletter.
Non-autoimmune explanations aside, there is more—but still scant and contradictory—evidence for auto-inflammatory and autoimmune disease mechanisms that may cause Postorgasmic illness syndrome. These proposed causes include:
Underlying inflammation of nearby organs, cause not specified
one case of inflammation of the epididymis (Huang et. al, 2022), the tightly coiled tube where sperm is stored
one case of concurrent inflammation of the bladder and Irritable bowel syndrome (Rosetti et. al, 2023)
Type 1 allergic reaction (1 case)
Combined types 1 and 4 allergic reaction (45-person study)
I Gotta Bring Up SPAGs
SPAGs is the acronym for SPerm-Associated AntiGens. Antigens are molecules on the outside or inside of a cell that antibodies react to. By definition, antibodies and antigens require each other. One cannot exist without the other. An antigen is usually a fully-functioning part of a cell, rather than just a molecule hanging around and waiting to be attacked by an antibody. SPAGs serve a number of different purposes in sperm cells and can also be found performing various functions in cells throughout the body. This excellent overview of SPAGs includes a chart on where else in the body particular SPAG types are expressed:
(Faraji et. al, 2021)
Anti-Sperm Antibodies (also found in the literature as ASAs) have also been preliminarily studied in men as they relate to infertility.
I have not been able to find that SPAGs and ASAs appear anywhere in the literature on Postorgasmic illness syndrome. This could be because Postorgasmic illness syndrome was found to still be present in three men after surgical sterilization (Rosetti et. al, 2023). Because of this, Waldinger (the original physician to publish information about this syndrome in 2002) theorized in 2016 that the auto-reaction may be to antigen(s) in semen only. I don’t consider this persuasive evidence that SPAGs and ASAs should necessarily be ignored going forward.
So what antigens are found just in semen?
More on that, and other Postorgasmic illness syndrome topics, coming up next week.
References
Faraji S, Sharafi M, Shahverdi AH, Fathi R. Sperm Associated Antigens: Vigorous Influencers in Life. Cell J. 2021 Oct;23(5):495-502. doi: 10.22074/cellj.2021.7377. Epub 2021 Oct 30. PMID: 34837675; PMCID: PMC8588810.
Postorgasmic illness syndrome. Genetic and Rare Diseases Information Center, National Center for Advancing Translational Sciences, National Institutes of Health. (2023, February). Retrieved May 15, 2023, from https://rarediseases.info.nih.gov/diseases/10809/postorgasmic-illness-syndrome
Rosetti L, Kanani A, Witherspoon L, Flannigan R, Elliott S. Case series: expanding diagnostic markers in postorgasmic illness syndrome. Sex Med. 2023 Mar 2;11(2):qfac021. doi: 10.1093/sexmed/qfac021. PMID: 36910704; PMCID: PMC9985106.
Waldinger MD. Post orgasmic illness syndrome (POIS). Transl Androl Urol. 2016;5(4):602–606. 10.21037/tau.2016.07.01.