Woman Claims Adenomyosis Diagnosis Destroyed Her Life After Years of NHS Dismissal

A Portsmouth resident has spoken out about her "traumatic ordeal" with adenomyosis, alleging she was repeatedly disregarded by healthcare professionals before finally receiving a diagnosis.

Rachel Moore, 37, endured years of severe chronic pain stemming from a uterine condition that she says was overlooked by the NHS despite multiple doctor visits. She ultimately underwent a private hysterectomy after facing an extended waiting period for specialist care.

The Struggle for Recognition

Adenomyosis is a medical condition frequently likened to endometriosis. It develops when tissue similar to the uterine lining infiltrates the muscular layer of the womb, leading to thickening and enlargement. Patients typically experience heavy and prolonged menstrual bleeding, persistent pelvic discomfort, and difficulties conceiving.

Moore, a mother of two, received her diagnosis only last year. She described a frustrating cycle of healthcare encounters in which she was prescribed various contraceptive options that provided minimal relief.

"I had a lot of pain with periods, I was back and forth to the doctor. I was put on lots of different contraception, that didn't really do anything to help. I was well for four days out of every month, it ruined my life," Moore recounted.

The patient expressed her frustration with feeling unheard throughout her medical journey. "I just felt like I wasn't being listened to. I was being fobbed off. I wanted to be heard and I didn't feel like I was getting that at all. I'm angry about it," she stated.

After repeated unsuccessful consultations, Moore was eventually referred to a gynecologist but faced a waiting period of nearly twelve months. Facing limited options, she opted to pursue private surgical intervention.

Systemic Issues and Lack of Guidelines

Health campaigner Tanya Simon-Hall, who directs the support organization The Adeno Gang, highlighted a critical gap in the healthcare system. She emphasized that women with adenomyosis encounter significant obstacles in obtaining diagnosis and appropriate treatment due to the absence of specialized NICE guidelines addressing the condition specifically.

"Stories like Rachel's are all too common sadly. Due to the lack of NICE guidelines a woman in Berkshire can get different advice and treatment from her doctor than a woman in Hampshire. It's not acceptable and we want to see this change," Simon-Hall explained.

Currently, broader clinical guidelines address fibroids, endometriosis, and abnormal menstrual bleeding but do not provide adenomyosis-specific recommendations.

Official Response and Government Action

Moore's GP practice has formally apologized for her experience and pledged to conduct a comprehensive review of her feedback. An NHS statement acknowledged the broader concern: "Too often we hear of women whose health concerns have been dismissed, and we are actively addressing this through education, training and improving services for women."

Health Secretary Wes Streeting recently discussed the issue during an interview with BBC Radio 4's Women's Hour, recognizing that some women have been treated as "second class citizens" with their pain dismissed "as an inconvenience and their symptoms as an overreaction." He committed to accelerating NHS waiting list reductions for women and enhancing access to women's health services, introducing a new "patient power payment" scheme among planned initiatives.

NICE stated that adenomyosis recommendations are included within their heavy menstrual bleeding guideline, with new topics considered through their established prioritization process.

Moore decided to share her account publicly to motivate other women to advocate for themselves within the healthcare system. "It's been a traumatic and painful journey. I just think that all women should be able to be heard and be listened to," she concluded.