Sacral neuromodulation (SNM) is a well-established therapy for refractory overactive bladder (OAB) and urinary incontinence, yet patient perceptions and concerns about the procedure remain poorly understood. Online discussions related to SNM therapy represent an important source of information and peer to peer education. This study is the first study to evaluate SNM discussions and patient post market experiences. The primary aims were to (1) qualitatively analyze patient-reported experiences with SNM, (2) identify common concerns and uncertainties, and (3) evaluate the quality of peer to peer education material. By examining these factors, the study seeks to provide insights that could enhance clinical counseling and patient-centered care.

A qualitative content analysis was conducted using publicly available discussions from the Reddit subreddits r/OveractiveBladder and r/Incontinence. The Reddit API was employed to extract the top 100 threads containing keywords "sacral neuromodulation," "Axonics," "InterStim," and "sacral nerve stimulation."   Two independent researchers performed iterative coding using inductive thematic analysis, with inter-rater reliability assessed via Cohen’s kappa. Themes were categorized into (1) patient experiences after therapy and reported complications, (2) pre-procedural concerns, and (3) misconceptions about therapy.

After excluding duplicates and irrelevant content, 464 threads and 3,413 comments were analyzed. Analysis of the discussions revealed that only 6.8% represented firsthand patient experiences with SNM, while 2.4% were inquiries from potential therapy candidates. The remaining 90.78% consisted of general discussions and opinions. Among those sharing postoperative experiences, 60% reported positive outcomes, endorsing the therapy for symptom relief, while 20% advised against it due to complications such as nerve pain, device discomfort, and the need for revision surgeries. The remaining 20% expressed mixed or neutral views.

-----------------------For non-SNM users, prevalent concerns included doubts about therapy efficacy, fear of postoperative pain, financial and insurance barriers, doubts related to post-market supplier services, and mistrust in medical expertise. Common misconceptions involved expectations of a complete cure for bladder symptoms, fears of permanent disability post-surgery, incompatibility with MRI and metal detectors, and potential effects on sexual function.

The findings underscore a disconnect between clinical success rates of SNM and patient perceptions shared online. While many patients benefit from the therapy, negative experiences and misconceptions dominate discussions, potentially deterring others from considering SNM. The low proportion of firsthand accounts suggests that patients may turn to online forums due to inadequate preoperative education or unresolved concerns. The prevalence of financial and procedural fears further indicates systemic barriers to SNM adoption.

This study reveals that online platforms like Reddit serve as critical spaces for patients to seek peer support and information about SNM, yet they also propagate uncertainties and misinformation. Clinicians must address these concerns by integrating patient-reported experiences into preoperative counseling, developing accessible educational materials, and fostering transparent discussions about risks and benefits. Medical device manufacturers should prioritize patient feedback to enhance device design and post-market support. By bridging the gap between clinical evidence and patient perceptions, healthcare providers can empower individuals to make informed decisions, ultimately improving satisfaction and outcomes with SNM therapy.