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Endometriosis: painfully under-diagnosed?

22 November 2019. Published by Amber Oldershaw, Associate

Endometriosis, described as a "silent source of unnecessary misery", affects over two million women in the UK. So, why is it taking over 7 years to diagnose?

A BBC study published this October revealed the challenges women who live with endometriosis face. Of the 13,500 individuals who participated, most relied on prescription painkillers to alleviate symptoms and reported a negative impact on their careers, relationships and mental well-being. More worryingly still, half of those suffering have experienced suicidal thoughts. This "silent source of unnecessary misery", which affects approximately two million women in the UK, currently has an average diagnosis time of seven and a half years. 

What is endometriosis?

Endometriosis is a condition where the endometrium, the innermost lining of the uterus, grows in other areas of the reproductive system and thickens, breaks down and bleeds with each menstrual cycle. The tissue is unable to leave the body and becomes trapped, resulting in scar tissue and adhesions.

For patients, endometriosis can lead to infertility, chronic fatigue, and bowel and bladder problems. Nationally, this condition costs the UK economy £8.2 billion per year due to the cost of treatment, healthcare and the time that sufferers take off work. 

The long delay in diagnosis often sparks debate. Critics have been quick to attribute the delay to the "gender pain gap", arguing that historical disparities in the medical treatment of women have led to misdiagnosis of female hormonal issues. A recent study by Birmingham University concluded that endometriosis is "a neglected area of research and funding". However, the delay in diagnosis and treatment of this illness arguably goes much further than gender disparities. 

Reasons for delayed diagnosis

It is widely accepted that both patients and physicians contribute to the delay in diagnosis. Female sufferers often ignore their symptoms, believing them to be the onset of menstrual cramps ("dysmenorrhea"). Those who do seek help from doctors are regularly treated with oestrogen-progesterone contraceptive pills or anti-inflammatory drugs (NSAIDs). These reduce pelvic pain, but may subsequently prevent diagnosis until the disease progresses some years after its initial presentation.

To avoid a delay in diagnosis, it is important for healthcare providers to identify women who are at high risk of having the condition; they need to be looking out for patients with a family history and those whose symptoms do not respond to non-steroidal anti-inflammatory drugs ('NSAIDs') or hormone treatment. The overlap of symptoms with a variety of problems, including ovarian cysts, irritable bowel syndrome and depression, continues to make accurate diagnosis problematic. 

Impact on health care providers & their Insurers 

The Minister for Women's Health, Caroline Dinenage, has urged clinicians to break down the stigma around endometriosis, by ensuring they follow NICE guidelines.
If health care providers continue to misdiagnose endometriosis despite the increasing public awareness of this issue, there could be a spike in related claims; for example, if a patient has a prolonged period of pain and suffering as a result of a delay in diagnosis, or if there is an impact on fertility.

Whilst limited UK case law exists at present, the recent case of X v Dartford and Gravesham NHS Trust (2018) considered damages owed to a claimant with pelvic inflammatory disease which remained undiagnosed and untreated for six months. As a result, she suffered from regular bouts of abdominal pain and became infertile. The breakdown of Special Damages included £12,000 for two cycles of IVF treatment and total damages amounted to £72,500. Such a case may be a useful indicator of the potential endometriosis claims awaiting health care providers and medical malpractice insurers. 

Insurers should seek confirmation that their Insureds (particularly those in primary care) are up to date on the literature surrounding endometriosis diagnoses to avoid falling foul of what is likely to be a developing area of delayed diagnosis claims.