Title: 'Adenomyosis may be invisible, its impact is not'

Adenomyosis affects at least one in ten women, a uterine disorder characterized by heavy, irregular, and painful menstruation. For some sufferers, the severity of the pain is excruciating; one woman described the sensation as having a "chainsaw" operating inside her. Mathilde Barker, a Surrey-based content creator who lives with both adenomyosis and endometriosis, recalled her most severe episodes: "When I was at my worst, it genuinely felt like I had a mass in my uterus and that it was dragging behind me."

The condition occurs when the tissue that normally lines the uterus grows into the muscular wall of the womb. Highlighting the frustration many patients face, a spokesperson for the Department for Health and Social Care told the BBC: "It is deeply concerning that so many women feel dismissed when they come forward with pain."

Warning: This article discusses distressing themes.

While adenomyosis shares many symptoms with endometriosis, the two conditions are distinct. In endometriosis, uterine-like cells grow outside the womb, potentially affecting other parts of the body. In contrast, adenomyosis involves these cells growing exclusively within the uterine muscle.

Barker, who has amassed over 500,000 followers on TikTok and Instagram, noted that her audience quickly identified with her stories, recognizing their own symptoms in hers. The 22-year-old was diagnosed with endometriosis at age 19 after undergoing laparoscopic surgery, and adenomyosis was added to her diagnosis two years later.

For many women, managing the condition is a source of significant frustration. Lauren Buckland, 36, experiences sudden, sharp pains that radiate to her uterus, lower back, hips, and pelvis. She recounted a particularly difficult moment: "[Once] I was walking home from work, and I was in tears of pain and I didn't know what it was."

Reflecting on her experience, Buckland added, "This is my body and it's not working how I'd like it to work, but I've got to work with it. It's a bit frustrating, but it's just being a woman, isn't it?"

Emma Blackburn, a 34-year-old from Broadstairs in Kent, suffers from constant pain. She describes the sensation as akin to "labour pain" that suddenly shoots into her pelvis. Blackburn also has endometriosis and fibromyalgia, and she structures her life around her menstrual cycle. "I pass clots every single cycle, ranging from anything like a 5p to a 50p," she said.

Blackburn emphasizes the need for greater public education regarding women’s health, particularly regarding the physical and mental toll these conditions take. Lesley Salem, founder of the workplace training organization Over the Bloody Moon, stated: "We want to make sure that hormonal health and menstrual health isn't a barrier."

Salem points out that a lack of awareness contributes to menstrual health issues, and that education is key to driving change. However, she acknowledges that workplace stigma persists, causing many women—particularly those early in their careers—to fear sharing their health struggles.

Experts agree that increased education and research are essential. Dr. Rebecca Mallick, a consultant gynaecologist at University Hospitals Sussex, said: "It all starts with education on all levels." She advocates for open discussions about menstruation from a young age, so it becomes common knowledge that periods which disrupt daily functioning are not normal.

Historically, adenomyosis has been difficult to diagnose because a hysterectomy was previously the only method to properly analyze the uterus. Additionally, the condition is not always visible on standard scans. Current research aims to improve diagnostic methods. Dr. Marianne Watters, a clinical researcher with Wellbeing of Women, is investigating whether adenomyosis can be detected through blood samples. She suggests that in the future, women might be able to use at-home testing kits to identify the condition.

"I hope that in the future we'll be able to improve on the ways that we currently diagnose," Watters said. "It is really surprising that we don't know more about this condition and that it's not more openly talked about in the public."

The diagnostic delays have taken a toll on patients’ mental health. Zara Dedman, 38, from Kent, said being "fobbed off" by doctors significantly impacted her well-being. "Each day, every month, I am hav...

Source: BBC News Generated at: 2026-05-20 05:10:39 UTC