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13 October 2005
Report Slams Doctors Over Slow Endo Diagnosis 
Endometriosis sufferers can wait up to ten years for the painful condition to be diagnosed, according to an article in the latest Journal of Clinical Nursing. The study criticizes doctors for what it says are "issues about the awareness and knowledge of this very commonly experienced condition among primary healthcare professionals." The researchers, from New Zealand's Massey University, have called for greater awareness of endometriosis and the development of "long overdue" pain management services for sufferers. The research was based on interviews with women aged between 16 and 45, canvassing their experiences with endometriosis, which is caused when cells normally found in the uterus lodge in other parts of the body. The cells often find their way to the lower abdomen, genital or urinary system, where they can cause bleeding, considerable pain and problems with fertility. What concerned the researchers most was the long period of time before a correct diagnosis was made. "The diagnostic process took an inordinate amount of time for most of the women in this study, which meant that they lived with chronic and mysterious pain for a considerable length of time" said researcher Annette Huntington. "Diagnosis typically took between five and ten years as general practitioners often told sufferers they had conditions such as irritable bowel syndrome." Some of the responses by participants in the survey make sobering reading. - Mimi spent years being told by health professionals that the pain she was suffering was part of the normal menstruation process. She was relieved when she was finally diagnosed with endometriosis. "It's not all in my head," she told the researchers. "It's got a name."
- Kate's doctor jokingly told her that getting pregnant and breast feeding for the next 20 years could reduce her symptoms. "I laughed at the time but I realized afterwards that it's just not funny," she said.
- Jane, who had been misdiagnosed with irritable bowel syndrome, raised the issue of endometriosis only after her husband recognized the symptoms in a magazine article he was reading in the doctor's surgery. "That's when we asked and he [the doctor] said 'oh yeah it could be'," she told the researchers.
"As well as causing them severe pain, endometriosis also had a negative impact on other areas of their life, such as their ability to work, family relationships and self-esteem," said Huntington. "However, once the women were referred to a gynecologist, endometriosis was promptly diagnosed." The majority of the women interviewed experienced severe pain and two-thirds rated it between eight and ten on a ten-point scale, with ten being the most severe pain imaginable. "The development of chronic pain management services for women with endometriosis is long overdue" added Huntington. "Much more needs to be done to ensure that the condition is diagnosed promptly and that women are offered the pain management services they need to cope with this debilitating condition." Source: Massey University
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