Endometriosis Care is Severely Lacking

Endometriosis is a condition affecting the female reproductive system whereby the cells similar to that in the wombs lining, the endometrial cells, grow outside of the womb. The build-up of these cells, are often found on the ovaries or fallopian tubes but can move into the bowel, bladder and other places in the body. During the menstrual cycle, these cells still break down and bleed as the womb lining does, but with nowhere for the blood to go, this causes scar tissue and intense excruciating pain. It is estimated that approximately 10% of women suffer with endometriosis which equates to 176 million worldwide. According to womenshealth.gov endometriosis ‘may affect more than 11% of American women between 15 and 44.’ In the UK, Endometriosis UK reports that it effects approximately 1 in 10 women of reproductive age. However, this condition is relatively unknown and currently the medical profession does not know enough about the condition nor how to cure or manage it.

Endometriosis has a detrimental impact on women’s lives, causing severe chronic pain, fatigue, depression, pain during sex, pain when passing stool or urine, irritable bowel, back pain, leg pain and pain between periods. It can also lead to problems with fertility. It is not an infection, nor contagious but research has not yet discovered the causes of the condition. Some theories however, suggest that endometriosis develops from an immune system dysfunction. Currently the only treatments available are pain relief, hormone therapy, (such as controlling a women’s period with the contraceptive pill or other forms of hormone treatment), or surgery where surgeons remove the problematic cells. Some women choose to have full on hysterectomies to deal with more severe cases. Currently the only definitive way to diagnose endometriosis is to have a laparoscopy, whereby a camera is placed into the pelvis via a small incision and the area examined.

Due to a limited knowledge about the condition, in the UK it takes on average 7.5 years for women to get a diagnosis. A new survey also revealed that in the UK around 58% of people with endometriosis visited their local doctor more than 10 times, the hospital over 5 times and 53% visited the emergency room before being diagnosed. In Australia, it was recently found that women wait on average 6.4 years for a diagnosis. The Endometriosis Foundation of America, suggests that it takes approximately 10 years before women are diagnosed. The condition can vary from person to person, but often causes severe and crippling pain which can trigger a number of other bodily reactions.

In a new inquiry into the condition in the UK, members of parliament pulled together a report that showed that the average wait time of eight years for a diagnosis had not been improved in a decade. The BBC reported: ‘The majority of people also told MPs their mental health, education and careers had been damaged by the condition.’ Due to the condition being both debilitating and affecting many aspects of a women’s life, and a severe lack of awareness around the condition and women’s health in general, many women lose jobs and have to adapt their livelihoods around the condition.

The report, from the All Party Parliamentary Group, called on governments in the UK to half the current eight year diagnosis time by 2025, reaching a target diagnosis time of a year by 2030. It also called for governments to invest in research around endometriosis to find the cause, treatment and management of the condition alongside: ‘Investigation into the barriers faced in accessing care for those from black, Asian and minority ethnic backgrounds and end the ethnicity and gender gaps in medical research.’

One of the issues surrounding endometriosis care and diagnosis is the lack of understanding around the condition, which can be partly attributed to a gender disparity in the health care system. Quoted in the BBC, Edward Morris, president of the Royal College of Obstetricians and Gynecologists’ (RCOG) said: “The long diagnosis times and poor patient experience could be attributed to the significant gap in data when it comes to women and girls.

“The RCOG would like to see medical research in this area prioritized.”

The UK minister of women’s health, Nadine Doris has said ‘I am committed to filling the evidence gaps to better understand the issues facing women and improve women’s health. We have provided £2m, through the National Institute for Health Research, to investigate the effectiveness of surgery compared with non-surgical interventions to manage chronic pain in a specific type of endometriosis. Clinicians have a vital role in removing the stigma associated with endometriosis and I would urge them to follow the NICE guidelines, and to do all they can to support the mental and physical health of those suffering from this condition.”