Study design, materials and methods
A cross-sectional cohort study using an anonymous online questionnaire distributed through social media groups and private practice clinics. Ethics approval was provided, and patients’ informed consent was public and accessible to all participants and provided at the start of the questionnaire.
A sample size of 384 was calculated by Qualtrics Precision Sample Size Calculator to give 95% confidence level and a significance level of 0.05.
Methods: Development and implementation of a novel questionnaire informed by recommendations in clinical management guidelines.
Main outcomes and measures: Descriptive data related to demographics including two validated tools (the Brief Pain Inventory and the Brief Illness Perception Questionnaire), beliefs and experiences related to diagnosis, health care practitioner interaction, assessment, and management of chronic pelvic pain.
Results
Of 465 participants, 64.3% experienced their pain before 18 years of age, but only 36.4% first sought help before 18 years of age. In those seen by a health care practitioner 42.9% felt their pain was not validated and 45.6% were not asked what their personal beliefs were for the cause of their pain. Participant’s pain profiles included 85.6% experienced pain during and in between menstruation with 59.3% using at least one form of hormonal therapy. Of 428 participants whom consented to answer optional sexual abuse questions, only 25.6% were screened by health care practitioners for a history of sexual abuse.
Of all participants, 90.8% received a physical examination to assist diagnosis, 60.0% felt the examination was thorough and 51.6% found it to be helpful. In addition, 80.4% of participants believed they needed a diagnosis for their chronic pelvic pain, prior to participating in treatment; 68.8% believed they had been given a diagnosis, and 65.6% felt the diagnosis was correct. However, 15.0% were unsure if the diagnosis was correct and 38.5% believed that something ‘worse’ was happening to them that had not been diagnosed yet.
Interpretation of results
Supported in a recent systematic review and European Association of Urology guidelines (1) adolescents should be encouraged to seek support before symptoms become severe. Adolescents can use suboptimal self-management strategies if not seen by a healthcare practitioner. If care is delayed it can lead to sequalae impact of chronic pelvic pain on educational study and extracurricular activity demands (2).
Additionally, those experiencing pelvic pain often experience dyspareunia, this was reflected by almost 80% of participants in our study. All educators need to be familiar with Comprehensive Sexuality Education, to help conceptualise positive sexuality from a young age and once more when to seek help.
The guidelines also strongly recommend that healthcare practitioners provide validation of the patient’s pain (1). The results of our study show a disconnect between clinical management guidelines and patient experiences which are reflected in other studies. It is well documented that disclosure of pelvic pain can be difficult; failing of healthcare practitioners to validate a patient's pain experience from the outset flows on to an inability for the patient to discuss their concerns as to the cause of their pain (3). This may lead to missed opportunities for the healthcare practitioner to triage accurate specialist referrals, educate and provide probable diagnosis rationale which serves to allay potential fears and catastrophising beliefs. Education would include the purposes of first line management options in line with clinical management guidelines such as hormonal therapy.