Adenomyosis occurs when the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus. The displaced tissue continues to act normally — thickening, breaking down and bleeding — during each menstrual cycle. It is thought to affect around one in 10 women in the U.K. and one in 5 globally. Additionally, 25% of cases affect women between the ages of 35 and 50.

Key facts:

• The exact cause is still unknown, but several factors are thought to contribute to its development, including hormonal influences, genetic predisposition, and previous uterine surgery or trauma​
• It is severely under-diagnosed and misunderstood: most women are told their severe period pain is “normal” or are misdiagnosed with endometriosis, fibroids, or other conditions with overlapping symptoms
• It takes 3-4 years to receive a diagnosis, while around 26% of women wait more than 10 years

Symptoms

• Heavy or prolonged menstrual bleeding
• Severe cramping or sharp pelvic pain during menstruation
• Painful intercourse
• Bloating, heaviness or fullness in your abdomen
• Extreme tiredness

Diagnosis

Previously, the only definitive way to diagnose adenomyosis was through hysterectomy (surgical removal of the uterus), where the tissue could be examined under a microscope. However, advancements in medical imaging now allow many specialists to identify adenomyosis using ultrasound or MRI scans.

Treatment

Most treatment options are focused on symptom management, including pain relief and medication and hormonal treatments, while hysterectomy remains the only known cure for adenomyosis

Our call to action:

• Awareness: Girls and women should be aware of symptoms and see a doctor as soon as any of the known symptoms occur.
• Research for non-invasive diagnosis and treatment