Women with adenomyosis describe severe pain and call for better diagnosis

At least one in 10 women live with adenomyosis, a condition that causes heavy, painful and irregular periods.

Mathilde Barker, a content creator from Surrey who has both adenomyosis and endometriosis, said the pain once felt like a mass in her uterus that was dragging behind her.

Adenomyosis occurs when the lining of the uterus grows into the muscle of the womb. It shares symptoms with endometriosis, but the cells remain inside the womb rather than appearing elsewhere in the body.

Barker, 22, was diagnosed with endometriosis at 19 after keyhole surgery and with adenomyosis two years later. She said her audience on TikTok and Instagram quickly recognized the symptoms she described.

Lauren Buckland, 36, said she experiences sudden stabbing pains in her uterus, lower back, hips and pelvis. She recalled walking home from work in tears from the pain and said she has learned to work with a body that does not always function as she would like.

Emma Blackburn, from Broadstairs in Kent, said she lives with constant pain that can feel like labour pains shooting into her pelvis. She has adenomyosis, endometriosis and fibromyalgia, passes large clots during her cycle and plans her life around her menstrual cycle.

Zara Dedman, 38, from Kent, said being dismissed by doctors has taken a toll on her mental health. She said she has had to explain the condition to consultants, doctors and nurses who asked what it was.

Lillie Bleasdale, a running coach and content creator from Maidenhead, said doctors once told her the pain might be in her head. She now uses social media to help other women learn about the condition and advocate for themselves.

Lesley Salem, founder of the workplace training organisation Over the Bloody Moon, said a lack of awareness around menstrual health leaves many women, especially those early in their careers, afraid to speak up at work.

Dr Rebecca Mallick, a consultant gynaecologist at University Hospitals Sussex, said education about menstruation should begin early so people understand that periods which stop daily functioning are not normal.

Dr Marianne Watters, a clinical researcher with Wellbeing of Women, is studying whether adenomyosis can be detected through blood samples. She hopes future at-home tests could help women identify the condition themselves.

A spokesperson for the Department for Health and Social Care said heavy and painful periods are too often treated as normal despite being recognised as early warning signs of conditions such as adenomyosis. The spokesperson added that it is concerning that many women feel dismissed when they report pain.