Chronic pelvic pain treatment understanding what matters: a social media survey

Selina Johnson, Emma Evans, Dharani K. Hapangama
In: Reproduction and Fertility · 2024 · vol. 6(1) · doi:10.1530/raf-24-0038 · PMID:39826244 · PMC11795530 · W4406469688
review OA: gold CC0 ⤵ 2 in-corpus citations
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

A social media survey of 864 women with chronic pelvic pain revealed a desire for treatment validation, self-management, and support to improve quality of life, with current healthcare experiences yielding low satisfaction.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-07 ⓘ

This UK social media survey studied treatment experiences, concerns, and treatment priorities among adult women with chronic pelvic pain (CPP) lasting at least 6 months, using an online questionnaire (May–June 2023) and descriptive statistics plus adapted STarT Back risk screening and reflexive thematic analysis. Among 864 respondents included after completion and location criteria, women reported moderate-intensity CPP with an average 6-year delay before diagnosis and care often beginning with general practitioners and gynaecologists; 85% were classified as medium–high risk for poor outcomes on the adapted STarT Back tool. Only 26% reported satisfaction with healthcare, while thematic analysis highlighted desired treatment validation/understanding, self-management support, and improvements in pain and quality of life, with variability in care beyond initial providers; the authors’ explicit limitation is that respondents were self-selected via social media and the sample was restricted to women identifying as female. Relevance to endometriosis: the participant demographics report that 64% of respondents had diagnosed endometriosis and the study notes long delays in diagnosing endometriosis as a contextual CPP issue, though the paper’s main focus is patient priorities and treatment experiences in chronic pelvic pain generally.

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Abstract

Abstract: Chronic pelvic pain (CPP) is a debilitating condition that reduces quality of life (QoL). In the United Kingdom, there is currently no standardised treatment pathway for women suffering from CPP. Therefore, it is essential to understand individuals' concerns regarding CPP, their treatment experiences and what they seek from treatment. To do this, we conducted a two-month social media survey focused on the UK population to explore treatment experiences and identify the factors that people consider important to managing their condition. Of 1,279 respondents, women who completed ≥50% of the questions were included (n = 864; 68%). Results suggest that many women are living with moderate-intensity CPP and experience symptoms for 6 years (average) before receiving a diagnosis. Initially, most women see general practitioners and gynaecologists (90%), with varied care beyond these providers. Using an adapted STarT Back tool, 85% of respondents were classified as medium-high risk of poor outcomes based on physical, psychosocial, and psychological risk. Thematic analysis identified that people desire treatment validation/understanding, self-management, and support to manage pain and QoL. Notably, only 26% of respondents report satisfaction with their healthcare experience, suggesting that current treatment approaches do not address these themes. In conclusion, results suggest that treatment should focus on quality-of-life improvement to enhance CPP treatment outcomes and satisfaction. Findings endorse the need for improved and standardised treatment approaches that address patients' needs. Lay summary: CPP is persistent pain in the lower abdomen or pelvis for at least 6 months. It is common and affects approximately 1 in 6 women in the UK. To improve treatment, it is important to understand people's treatment experiences and treatment needs. We conducted a social media survey to understand how people with CPP experience treatment and what they would like from treatment. The survey was posted online for two months (May and June 2023) and received 897 responses. Responses suggested that people experience long waits before receiving help for their pain and that treatment journeys vary greatly. Overall, people reported low treatment satisfaction. People felt that effective treatment should improve pain and QoL. Themes of understanding their pain, knowing how to manage their pain and understanding treatments were identified as important. Clinicians should consider QoL and pain education as part of treatment.

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chronic_pelvic_pain

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