Need to Raise Awareness of Endometriosis

Roy has spoken in an Assembly debate on Endometriosis, a common condition in which small pieces of the womb lining (the endometrium) are found outside the womb.
“That this Assembly calls on the Minister of Health, Social Services and Public Safety to initiate and expedite an inquiry into the urgent need for an integrated endometriosis service to address the severe suffering experienced by women with this condition across Northern Ireland.”

 Mr Beggs: I, too, support the motion. Endometriosis affects thousands of women in Northern Ireland and hundreds of thousands of women in the United Kingdom. In a recent Assembly answer to a question from the Chair of the Committee, the Health Minister indicated that some 1,155 hospital admissions in Northern Ireland in 2011-12 were as a result of diagnosis of endometriosis.
The lack of awareness of the condition is of particular concern, and that is why I welcome this debate. As other Members said, the condition is indicated by a range of very common symptoms, such as heavy period pains, lower abdomen or back pain and fertility problems. There are other symptoms such as discomfort when urinating, bleeding from the rectum, bowel blockage and coughing up blood. Side effects include lack of energy, depression and fertility issues.
The very nature of the range of symptoms results in the involvement of a range of specialists in investigating the undiagnosed condition, including gynaecologists, urologists, gastroenterologists, fertility experts, endocrinologists, as well as specialists in pain management to help sufferers to get through the condition. Ultimately, the gold standard test, which most sufferers will undergo after a long route, is the laparoscopy under general anaesthetic.
Only 20% of the population know about the condition. In a 2006 briefing to the all-party parliamentary group of MPs, sufferers, especially younger women, indicated that only 50% of GPs had taken them seriously. Surprisingly, 33% of gynaecologists did not take women with the condition seriously in the early presentation; indeed, 45% of women with endometriosis had seen a physician five or more times before diagnosis. There is a long and torturous path to travel before the correct diagnosis occurs.
It is particularly concerning because, when the illness has been diagnosed, given the range of ailments that I described, people’s worst fears are that it can result in a wide range of other conditions. Ultimately, if they are not receiving appropriate treatment, that can cause great concern for their well-being and mental health.
Often, in the early stages, about two thirds of cases were found to have been misdiagnosed, which resulted in ongoing suffering, poor use of National Health Service resources, frequent accident and emergency department attendances and difficulty in retaining employment. The cause or trigger of endometriosis is largely unknown. It is a long-term condition, which can become chronic.
Another area of concern amongst women with this condition is the patchy nature of the specialist pain clinics across the different health trusts in Northern Ireland. I am aware of concern within my area and that additional resources need to be given to the Northern Health and Social Care Trust’s pain clinic, because pain management is often a key issue in trying to improve quality of life.
Treatment can comprise hormone therapy, surgery or even, in the most severe cases, hysterectomy. Surgery is often complicated by the range of specialists required and the lack of joined-up procedures involved. That may result in additional delays and multiple operations on the individual.
What can be done? Like other Members, I support investment to try to create an integrated endometriosis service in Northern Ireland, which will provide and improve the care that sufferers receive. Although the long-term vision is for a new women’s hospital, such a building would be a number of years away even if it was commissioned today. So, it is essential that we move now to try to bring together the specialist team that others have talked about in order to provide that integrated service, have a better co-ordinated use of specialists and improve the lot of those involved.
In England, nurse-led clinics have been widely used to increase support for those with this condition. So, I too support the establishment of a regional endometriosis centre with a dedicated interdisciplinary team to improve diagnosis for those who suffer from this condition and to improve their lifestyles.

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