A UK mother's intense, decades-long battle with pain was repeatedly dismissed by the National Health Service (NHS) as severe menstrual cramps, leading to a medical crisis and permanent damage before she finally received a correct diagnosis. Sonia Shannon, now 35, recently revealed her harrowing 22-year journey to a diagnosis of deep infiltrating endometriosis, a journey marred by systemic failures in recognising the condition.
A Lifetime of Pain Dismissed
Sonia's ordeal began when she was just 13 years old. She developed such severe pain during her periods that it caused her to faint multiple times. Instead of investigating the root cause, medical staff prescribed pain medication. This pattern continued for years, with her symptoms being written off as normal period pain. After giving birth to her daughter Skyla in 2009, her condition worsened. She visited the Colchester Hospital A&E countless times with debilitating pain, only to be sent home with painkillers.
The breaking point came in 2015. Sonia spent a week experiencing daily collapses before doctors finally diagnosed her with a medical emergency. She was found to have sepsis, a large ovarian cyst, and the root cause: deep infiltrating endometriosis. This condition causes womb-like tissue to grow deeply into pelvic and abdominal organs, including the ovaries, bladder, and bowel.
Devastating Health Consequences of Delay
By the time Sonia was diagnosed, the untreated endometriosis had caused catastrophic damage. The tissue had formed scars, caused inflammation, and led to her organs fusing together. She developed liver, lung, and kidney problems. The pain became so intense it rendered her unable to move from bed, accompanied by brain confusion and sexual discomfort with her husband Ashley.
Multiple surgical procedures were needed to remove the affected tissue, but the condition had progressed too far. The organ fusion resulted in permanent, disabling symptoms that doctors stated could have been treated effectively if caught earlier. Her story is a stark example of how delayed care transforms a manageable condition into a chronic, life-altering disease.
Why Endometriosis Diagnosis Takes a Decade in the UK
Sonia's experience is tragically common. Medical evidence shows endometriosis symptoms are frequently misidentified as typical "bad periods." In the UK, women face an average delay of 8 to 10 years before diagnosis. This is due to a lack of understanding among doctors and the dismissal of women's menstrual discomfort.
According to Endometriosis UK, 47% of patients visit their GP at least 10 times before their condition is suspected. A staggering 74% report being dismissed by doctors who offer only pain relief without considering endometriosis. Although NICE guidelines recommend evaluation for persistent pelvic pain, healthcare providers often fail to make referrals due to NHS system obstacles and insufficient consultation time.
Surveys indicate that while 10% of women receive early suspicion of endometriosis, A&E facilities conduct minimal investigations. One study found only 2% of such cases received proper inquiry in emergency settings, leading to most patients, like Sonia, being sent home without answers.
The health impact of this delay is severe. Untreated endometriosis leads to chronic pain, fatigue, depression, infertility, bowel obstruction, and increased risk of sepsis. In contrast, early diagnosis via ultrasound or laparoscopy can halt disease progression, preserve fertility, and allow for effective management through hormone treatment and pain therapy, vastly improving quality of life.
