Patient Stories & News Updates
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The Grief We Don’t Talk About: Living With Chronic Illness
• September 15, 2026When we hear the word grief, most of us think about losing someone we love, but grief can also happen when chronic illness changes the life we expected to live. People living with chronic illness may grieve their health, independence, career, relationships, physical abilities, financial security, identity and plans for the future. These losses can… -
Becky Chandler-Berry’s Story
• July 31, 2026Becky Chandler-Berry, MD My tailbone pain began in 2019 and left me barely able to sit on the medical stool in my office while I saw patients. -
Zdenko’s Story
• July 8, 2026I believe I have symptomatic Tarlov cysts, because I have fluctuating sacral and perineal dull pain, worsening with longer walking, standing, banding and sometime burning sensation on the back of my legs and on my soles. I also have a history of acute low back pain too, which may be connected with (or completely caused… -
Behind The Tarlov Cyst Society: The Story Behind the Organization
• June 11, 2026When people visit the Tarlov Cyst Society website, they often see educational articles, research updates, physician information, patient resources, and advocacy campaigns. What they don’t always see is the person working behind the scenes to help make it all happen—or the questions that guide every decision we make. As the Tarlov Cyst Society Founder, I… -
Tarlov Cysts and Interstitial Cystitis: Is There a Connection?
• May 23, 2026Many people diagnosed with Interstitial Cystitis spend years searching for answers about chronic bladder pain, urinary urgency, pelvic pressure, and painful sitting. What many patients don’t realize is that some of these symptoms may overlap with symptomatic Tarlov Cyst Disease. At the Tarlov Cyst Society, we regularly hear from patients who were initially diagnosed with Interstitial… -
Tarlov Cyst Surgical Care Now Available in Indonesia
• April 27, 2026Expanding 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… -
A Urologist’s Perspective on Pelvic Pain and Tarlov Cysts–Related Symptoms
• December 18, 2025People 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… -
Introducing the Tarlov Cyst Disease Education Kit: Now available at the Society!!
• November 25, 2025For 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… -
Understanding the Connection between Tarlov Cyst and Sexual Dysfunction
• November 15, 2025For 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…