About Us
Postorgasmic-Illness-Syndrome About Us
Our Story
POIS-Network started as a Germany-based self-help group for people affected by Postorgasmic-Illness-Syndrome (POIS). We were founded in Berlin in May 2024 by patients who know firsthand the deep suffering that POIS can bring. Before the age of the internet, finding any information on POIS was nearly impossible. It took us years to even recognize and name the condition we were suffering from. But when we finally connected as a group, something changed: For the first time, we felt understood, validated, and not alone. That moment of connection was powerful — and it inspired us to build a platform to help others.
Why We Exist
Living with POIS often means dealing with:
- Severe, recurring physical and mental symptoms
- A lack of recognition by doctors and healthcare providers
- Feeling misunderstood by family and friends
- Years of confusion, misdiagnosis, and isolation
Many of us spent a long time „wandering“ through the healthcare system — alone, frustrated, and desperate for answers. Even today, POIS remains largely unknown in the medical community, and clear treatment paths are rare.
What We Stand For
The POIS-Network exists to:
- Offer real-world support for people living with POIS
- Share knowledge, coping strategies, and new research
- Raise awareness among medical professionals
- Connect individuals who often suffer in silence
- Promote community, hope, and solidarity