Expanding access to treatment in a region where patients have struggled to find informed care The Tarlov Cyst Society has identified a spine surgeon in Indonesia who is actively treating patients with symptomatic Tarlov Cysts, marking a potential expansion of access to care in a region where options have historically been difficult to find. This…
People living with Tarlov Cyst Disease often hear the same frustrating message: “Your symptoms don’t fit neatly into one box.” “Your imaging doesn’t explain your pain.” “This must be pelvic floor, bladder, or anxiety-related.” That’s why a recent interview published by UroToday deserves attention from our community. In this interview, Dr. Elise De — a urologist with extensive expertise…
For years, people living with Tarlov Cyst Disease (TCD) have been forced to navigate a medical landscape filled with confusion, dismissal, and old assumptions that refused to die. Many of us know the script by heart: “Your cysts are incidental.” “They don’t cause pain.” “There’s nothing more we can do.” Meanwhile, research tells a very…
For many years, patients living with Persistent Genital Arousal Disorder (PGAD) or Genito-Pelvic Dysesthesia (GPD) faced challenges. These conditions are characterized by chronic, unrelenting genital arousal and pain. Unfortunately, many patients were left without answers. In 2012, researchers Komisauk and Lee made a significant discovery. They found that sacral Tarlov cysts appeared in a striking…
Living with Tarlov Cyst Disease can be an uphill battle, fraught with challenges ranging from misdiagnosis to dismissal by medical professionals. It’s a reality that many of us face on our journey with this complex condition. However, amidst the frustration and uncertainty, it’s essential to remember one fundamental truth: medical professionals are human too. The…
End of content
End of content