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Spotlight on Endometriosis

In our first spotlight on women's health we're focusing on Endometriosis, the impact of delayed diagnosis and how it is treated.

Endometriosis: The female fight for one in 10

One in 10 women of reproductive age is likely to have endometriosis; many of them will not even be aware that there is anything wrong as painful heavy periods are an accepted norm.

A spokesperson from Endometriosis UK says: "All too often, women are told their pain is 'normal' or 'in their head' and it is not taken seriously. The All-Party Parliamentary Group (APPG) for Endometriosis (launched in 2018) say that it takes, on average, eight years to diagnose the condition, of which little is known about its cause and for which there is no cure."

Despite the recent media attention championed by sufferers such as Emma Barnett (British broadcaster & Journalist) and supported by clinicians such as Professor Andre Horne (Professor of Gynaecology & Reproductive Sciences University of Edinburgh)  campaigners say that more needs to be done to raise awareness of the condition which is estimated to affect the same number of people as Type 2 diabetes.

Endometriosis UK state that an inquiry by the APPG* found that prior to getting a diagnosis and for people with symptoms:

  • 58% visited their GP more than 10 times
  • 43% visited doctors in hospital over 5 times
  • 53% visited A&E
  • Once diagnosed, only 19% know if they are seen in an endometriosis specialist centre;
  • 90% would have liked access to psychological support, but were not offered this.

The report was identified to highlight the urgent need for more research into the experiences and needs of those from LGBTQ+, black, Asian and minority ethnic backgrounds. Endometriosis UK state that more must be done to understand the health inequalities and barriers for those from minority backgrounds in accessing the care they need.

"We are seeing women who have been in the health care system for years, by the time they are seen by specialist endometriosis teams, due to the impact of the disease on their physical health, relationships and work life, they are suffering with significant mental health illness. In addition opportunities to access fertility treatment/IVF are deteriorating by the day compounding the feelings of helplessness. COVID-19 will impact on these delays even further with the growing backlog on waiting lists that have been reported. A lack of prioritisation of this group of women for diagnosis and treatment will continue to have a detrimental effect on the NHS the economy and most importantly the women and her family." Pamela Kilcoyne, Associate Expert Witness & Nurse

*APPG surveyed over 10,000 people with endometriosis & interviewed healthcare practitioners and those with the condition about their experiences.

Endometriosis in the medico-legal world

The impact of Endometriosis on a woman can be both physically and psychologically harmful. Add to this the impact of delayed diagnosis and treatment, a woman's quality of life (including education, work, relationships and social life) is greatly reduced and may also result in the disease progressing to an unmanageable state.

If a GP, gynaecologist or other healthcare professional was negligent in investigating and diagnosing the condition, our liability experts and registered nurses are able to comment for Claimant or Defendant solicitors on the standard of care provided, including any breach of duty identified, in relation to reasonable practice, referring to best practice and clinical guidelines applicable to the time the condition occurred and/or the care in question was provided.

Our quantum experts and registered nurses quantify a woman's pain and suffering and the impact on their health as well as their financial losses.

Helen Wall, Registered General Nurse, Expert Witness and Business Manager within Bush & Co's Expert Witness Service comments:

"Our expert witnesses experienced in working with women with Endometriosis can provide a high standard of pelvic health evaluation, a sound understanding of the legal issues involved in pelvic health clinical negligence claims and a detailed, professional handling of the case. The women they see have often had many years of poor understanding, lack of support and a failure to be listened to and these cases can be complex. Sensitivity, coupled with experience of delayed diagnosis, prolonged suffering and pain and the associated symptoms such as infertility, avoidable surgery and mental health issues should be sought in the right expert witness for a medico-legal case."

What is Endometriosis?

Endometriosis can affect women of any age and is classically defined as the presence of endometrial glands and stroma outside the uterine cavity.

Every month the cells react in the same way as those in the womb by building up and breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.

This leads to extremely painful, heavy periods and in some cases can also cause infertility, fatigue and bowel and bladder problems because of inflammation and scar tissue.

How is Endometriosis treated?

Endometriosis is a long-term condition that can have a significant impact on women's lives.

It is acknowledged that it can be difficult to diagnose endometriosis because the symptoms can vary considerably, and many other conditions can cause similar symptoms.

A GP will undertake an assessment of a person's symptoms, and may ask to undertake a vaginal and abdominal examination.

Treatment can be given to:

  • relieve pain
  • slow the growth of endometriosis tissue
  • improve fertility
  • stop the condition returning