Objective <p>Cauda equina syndrome (CES) is an emergency disease that can lead to serious sequelae. The purpose of this study was to deeply understand the experience and need of patients with CES caused by lumbar disc herniation (LDH).</p> Methods <p>Sixteen patients diagnosed as CES caused by LDH were enrolled. Descriptive phenomenology was used to collect data through semistructured face-to-face interviews. Colaizzi7’s seven-step analysis method was used to sort out and code the original interview data to form the thematic framework.</p> Results <p>Four themes were extracted from the interviews. The theme 1 was difficulty of disease recognition and doctor selection, the subtheme were Poor knowledge of the disease and the difficulty of choosing a hospital and department. The theme 2 was lacking of specialized information and misleading by misinformation, the subtheme were desire for information related to surgery and rehabilitation and misinformation affected the patients’ decision-making. The theme 3 was coordination and process issues within health system, the subtheme were the sharing or mutual recognition of examination results and not clear about the medical insurance policy. The theme 4 was emotional response and psychological need, the subtheme were preoperative inner conflict, worry about the prognosis and desire for family and external support.</p> Conclusion <p>This study demonstrated that CES patients faced complex challenges throughout the treatment process. These issues should be studied and solved in the future.</p>