This original clinical research is the first qualitative study exploring the experiences of patients with  mesh related pain. Mesh Associated Pain Syndrome (MAPS), is the commonest reason women access care at mesh complications services. Qualitative work exploring the expectations of women with MAPS is limited. The aim of this study is to explore the concerns and goals of women with MAPS related to a single continence device who accessed care at a quaternary-level mesh service to ensure mesh services are designed to meet patient needs.

A Thematic analysis of free text comments from participants in a cross-sectional study. All women with MAPS related to a single continence device who accessed a quaternary-level mesh complication service between 26/01/2018 to 19/04/2024 were included in the study. 

A total of 280 women with MAPS managed in the mesh service over 5 years were invited to provide free text comments on concerns and goals related to their mesh complication using the validated Electronic Patient Assessment Questionnaire (e PAQ). Of 280 participants, 203 completed the e PAQ (response proportion 73%) and 179 (response proportion 64%) provided comments. These were analysed by 2 independent reviewers including one who was unconnected to the mesh service and reviewed by a third analyser, a clinical psychologist. Thematic analysis was performed based on the methodology proposed by Braun and Clarke.

Following familiarization with comments, 38 codes were developed, and 109 sub codes were identified. These defined 8 core themes: Management of symptoms, Restoration of normality, Improving quality of life, Need for answers or reassurance, Causality between mesh and other symptoms, Request for mesh removal, validation and sexual function. Concerns regarding pain accounted for 22% (n=106/489) of comments. Concerns about symptoms unrelated to pain including bladder, bowel and prolapse symptoms featured heavily in comments. Common concerns reported included impact on Quality of Life (QOL) and sexual function. Goals desired by women included a wish to be listened to, to have questions answered and to establish whether existing symptoms were related to their mesh device. Resolution of symptoms was desired by most women, however a proportion requested symptom reduction. Mesh removal surgery was a common goal reported; a smaller proportion wished information and reassurance about the integrity and future threat of mesh remaining in their body.

Despite pain being the primary reason for referral to the mesh service, concerns unrelated to pain were the commonest documented. Pelvic floor dysfunction including bladder, bowel and sexual function were frequent symptoms raising concern. Whist most women desired a definitive resolution of their symptoms with many requesting mesh removal surgery, symptom reduction and reassurance regarding the future risks and safety of mesh devices remaining in the body were the motivations of a few women. The importance of having questions answered and feeling that concerns had been listened to were valued by many.

Patients with MAPS appear to have concerns unrelated to pain including pelvic floor dysfunction and these may be the primary motivation for accessing care at mesh complication services. QOL, restoration of sexual function, reassurance and validation were common findings. Whilst mesh removal was a motivation for many this was not requested by all.  This highlights the importance of mesh services offering choice, multi- modal treatments for pain and individualized and holistic care through multidisciplinary team involvement including pain management, physiotherapy, psychosexual and psychological management services.