postorgasmic-illness-syndrome
One year POIS-Network
Growing demand for information
2025 marked the first full calendar year of activity for POIS-Network. Between January 1 and December 31, the platforms POIS-Network and POIS-Deutschland together reached nearly 5,000 users worldwide, generating approximately 30,000 interactions.
For a rare and still largely unknown condition, these figures reflect a sustained global demand for reliable information. Interest remained steady throughout the year and was not limited to temporary peaks of public attention.
Direct inquiries from affected individuals
In addition to website traffic, 58 individuals contacted us directly via email in 2025, resulting in ongoing exchanges involving approximately 260 responses. The oldest person seeking information was over 70 years old and had only developed POIS symptoms in recent years.
The inquiries covered a wide range of topics, including the interpretation of symptoms, possible diagnostic and therapeutic approaches, and questions about appropriate medical specialties. These exchanges reflect a pattern commonly observed across rare diseases: many affected individuals spend years searching for a clear medical explanation and appropriate medical guidance.
Community exchange and peer support
Beyond email communication, there were numerous phone conversations as well as active discussions within our German-language Telegram community, which has grown to more than 60 members. In addition, several individuals were connected with an international WhatsApp support group, enabling further exchange with affected people from different countries.
Taken together, these interactions highlight the considerable need for accessible information, peer exchange, and structured orientation regarding postorgasmic-illness-syndrome (POIS).
Structural challenges in healthcare
At the same time, the requests received illustrate a broader structural challenge. Despite increasing scientific interest in recent years, postorgasmic-illness-syndrome remains insufficiently recognized within routine clinical practice. Standardized diagnostic pathways are lacking, and evidence-based treatment recommendations remain limited.
As a result, many patients experience prolonged diagnostic uncertainty and limited access to informed medical care. Improving awareness among healthcare professionals and strengthening connections between patients, clinicians, and researchers therefore remains an important priority.
Building awareness and connections
Initiatives such as POIS-Network and POIS-Deutschland aim to contribute to this process by facilitating access to information, supporting patient exchange, and providing structured overviews of emerging scientific research.