"Adenomyosis may be invisible, its impact is not"

Adenomyosis, a uterine condition affecting at least one in ten women, is often characterized by heavy, irregular, and painful menstruation. For some sufferers, the discomfort is excruciating; one patient described the sensation as having a "chainsaw" operating inside her. Mathilde Barker, a 22-year-old content creator from Surrey 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 begins to grow into the muscular wall of the womb. While adenomyosis shares several symptoms with endometriosis, the two are distinct. In endometriosis, similar cells grow outside the uterus, potentially affecting other parts of the body, whereas in adenomyosis, the growth remains confined within the womb.

A spokesperson for the Department for Health and Social Care expressed deep concern to the BBC, stating, "It is deeply concerning that so many women feel dismissed when they come forward with pain."

Living with the condition

For Barker, who has amassed over 500,000 followers on TikTok and Instagram, the journey to diagnosis was long. She was diagnosed with endometriosis at age 19 after undergoing laparoscopic surgery, with adenomyosis identified two years later. She noted that her online community quickly became a support network for others experiencing similar symptoms.

The daily reality for many women with the condition is fraught with frustration. Lauren Buckland, 36, experiences sudden, sharp pains in her uterus, lower back, hips, and pelvis. Recalling one incident, she said, "[Once] I was walking home from work, and I was in tears of pain and I didn't know what it was." Despite the challenges, Buckland maintains a resilient outlook: "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, Kent, lives with constant pain alongside adenomyosis, endometriosis, and fibromyalgia. She describes the pain as sudden and intense, likening it to "labour pain" that shoots into her pelvis. To manage her condition, Blackburn structures her life around her menstrual cycle and reports passing clots ranging from the size of a 5p to a 50p coin every cycle. She advocates for greater public education regarding women's health, emphasizing the significant physical and mental toll these conditions take.

Workplace stigma and the need for awareness

Lesley Salem, founder of the workplace training organization Over the Bloody Moon, highlights the persistent stigma surrounding menstrual health, particularly for women early in their careers who may fear sharing their struggles. "We want to make sure that hormonal health and menstrual health isn't a barrier," Salem said, noting that increased education is key to driving change.

Health experts agree that systemic education is crucial. Dr. Rebecca Mallick, a consultant gynecologist at University Hospitals Sussex, stressed, "It all starts with education on all levels." She argued that discussions about menstruation should begin at a young age to establish the understanding that periods severe enough to disrupt daily functioning are abnormal.

Diagnostic challenges and future hopes

Historically, adenomyosis has been difficult to diagnose because a hysterectomy was previously the only method for definitive analysis, and the condition is not always visible on standard scans. However, research is underway to improve detection methods. Dr. Marianne Watters, a clinical researcher with Wellbeing of Women, is investigating whether blood samples could be used to identify adenomyosis. She envisions a future where women might use at-home testing kits for self-diagnosis.

"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 lack of immediate answers can have severe psychological consequences. Zara Dedman, 38, from Kent, revealed that being dismissed by doctors has significantly impacted her mental health, noting that "each day, every month, I am hav..." [Text ends]

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