None listed
Conditions
Brief summary
Like endometriosis, adenomyosis is a benign uterine disorder and is histologically defined by presence of endometrial tissue in the myometrium (muscle layer) of the uterus. The prevalence of adenomyosis is difficult to determine, since histological confirmation is necessary following surgical biopsy or more commonly hysterectomy. For women wanting to retain their uterus, hysterectomy is not an option. Imaging technologies (e.g. transvaginal ultrasound and MRI), are used as a less invasive method of diagnosis and detection, although they have limitations. The Australian Endometriosis Clinicians Collaborative (AECC): adenomyosis substudy is a prospective longitudinal clinical study that will: 1. compare diagnosis and treatment of adenomyosis with regards to impact on pain, bleeding patterns, general health symptoms and quality of life using validated questionnaires 2. determine cost-effectiveness of diagnostic and treatment options 3. establish a national biobank of adenomyosis (and endometriosis) for future research capacity. Outcomes will determine optimised diagnosis and treatment pathways for clinicians that improve quality of life for women with adenomyosis.
Interventions
Current standard of care and management (e.g. hysterectomy) for patients with adenomyosis. Participants will be asked to complete online questionnaires at time of consent, related clinical care information (either from medical records or the clinician directly) will be entered onto the NECST Registry. Consenting participants will be followed up at 6-, 12-months and then annually post-enrolment for 5 years.
Sponsors
UNSW
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
• Enrolled into the main study ACTRN12622000987763 • Have had surgery which has confirmed that you have adenomyosis • Have any of the below symptoms that might be caused by adenomyosis: - persistent pelvic pains - problems with falling pregnant - excessive menstrual bleeding or bleeding between periods - heavy periods - pain when urinating - pain with bowel motions/passing stools - pain with sex. • Speak English
Exclusion criteria
• Women unable to provide informed consent • Females aged under 18 years of age • Women who are not resident in Australia or planning to not reside in Australia for the forseeable future • Women with insufficient English language ability to give informed consent and complete the baseline survey instruments (at this stage, consent materials and survey modules are only available in English)
Outcome results
None listed