Endometriosis Awareness Month

March is Endometriosis Awareness Month and is an opportunity for all women to understand more about this condition, what symptoms to look for, and potential treatment options they can discuss with their health care providers. It also brings to light the recurrent delays in identifying and treating the debilitating condition and the potential for claims to be pursued for substandard treatment. Endometriosis is a condition where tissue similar to the womb lining grows outside the uterus, affecting fertility and causing symptoms such as painful periods, painful bowel movements, and pain during sex. The delays in diagnosis can lead to more severe symptoms and organ damage including the bowel and kidneys as well as impacting fertility.

During Endometriosis Awareness Month there have been a number of high-profile accounts of delayed diagnosis of endometriosis. Such as Olivia Culpo, a model and former Miss Universe winner, has shared her struggles with receiving proper care for her endometriosis condition. Despite experiencing symptoms for years, it took seeing “at least 12” doctors before she was diagnosed in 2020. Culpo recounted how doctors dismissed her symptoms, attributing them to normal occurrences or improper hygiene. She revealed she has rectovaginal endometriosis, a severe form of the condition where uterine tissue grows outside the uterus, penetrating deep into the vagina and rectum.

Bindi Irwin, daughter of Steve Irwin, endured years of dismissive treatment for her endometriosis symptoms, which included intense pain, nausea, and fatigue. Despite repeatedly expressing her concerns to doctors, she was told her symptoms were due to hormones, stress, or imagined. This dismissal caused her anxiety and depression, leading her to give up seeking answers. Her symptoms became so severe that they impacted her daily life, causing her to withdraw from activities and even experience pain during simple actions like hugging. It wasn’t until she connected with a friend who shared her endometriosis experience on social media that Irwin realised the cause of her suffering. Recognising her symptoms in her friend’s story, she sought further medical help and finally received a diagnosis.

A recent study conducted by Endometriosis UK revealed that women in the UK are waiting almost nine years on average for a diagnosis of endometriosis. The research, based on a survey of over 4,000 individuals with the condition, found that health professionals often minimise or dismiss symptoms, leading to lengthy delays in diagnosis. 

Key findings from the study include:

• The average waiting time for a diagnosis of endometriosis has increased to eight years and 10 months, up by 10 months since 2020.
• Almost half of the respondents visited their GP 10 or more times before receiving a diagnosis, and 70% visited five times or more.
• Only 10% of respondents were informed by GPs that endometriosis was suspected during their initial appointments.
• Many patients reported being dismissed or belittled by medical professionals, with some told that their symptoms were “normal” or due to stress.

The report underscores the need for improved awareness and education about endometriosis among healthcare professionals and the public. It calls for governments to commit to reducing diagnosis times to a year or less by 2030 and urges NHS commissioners to prioritise reducing gynaecology waiting times.

In 2018, the National Institute for Health and Care Excellence (NICE) introduced guidelines aimed at accelerating the diagnosis and treatment of patients with endometriosis. These guidelines focus on three high-priority areas to improve the quality of diagnosing and treating the condition:

1. Women presenting with suspected endometriosis should undergo an abdominal and, if appropriate, a pelvic examination.

2. Women whose initial hormonal treatment for endometriosis is ineffective, not tolerated, or contraindicated should be referred to a gynaecology service.

3. Women with suspected or confirmed deep endometriosis involving the bowel, bladder, or ureter should be referred to a specialist endometriosis service.

These quality standards aim to enhance awareness of endometriosis, increase early diagnosis rates, improve the quality of life for affected women, provide access to specialist services, and assist women in managing their pain. The overarching goal of the guidelines is to elevate the quality of care provided to patients with endometriosis, however despite the NICE guidelines there are still substantial delays.

Delayed diagnosis of endometriosis can have profound consequences for patients, causing increased pain and impacting their well-being. If you have experienced a delayed diagnosis of endometriosis and believe you may have suffered negligence, contact the medical negligence experts at Davies and Partners, to explore your options for pursuing a claim.”

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