Women with endometriosis can wait up to ten years for the painful gynaecological condition to be diagnosed, according to a paper in the latest Journal of Clinical Nursing.
Their experiences have led researchers from New Zealand's Massey University to call for greater awareness of endometriosis and the development of "long overdue" pain management services for sufferers.
Women with the chronic and progressive condition can experience constant pain, reduced quality of life and even suicidal feelings, say Professor Annette Huntington and Senior Lecturer Jean A Gilmour.
The researchers carried out in-depth interviews with women aged from 16 to 45 about 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 or genitor urinary system, where they can cause heavy bleeding, considerable pain and problems with infertility.
"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" says Professor Huntington.
"Diagnosis typically took between five and ten years as general practitioners often told sufferers they had conditions such as irritable bowel syndrome.
"This significantly affected the women's quality of life. 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.
"However, once the women were referred to a gynaecologist, endometriosis was promptly diagnosed.
"This raises issues about the awareness and knowledge of this very commonly experienced condition among primary healthcare professionals."
The majority of the 18 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.
Paula told researchers that endometriosis caused her "crippling disabling pain". "It felt like my inside were coming out of my body at times" she said. "My legs used to feel like they were lumps of iron." Barbara recognised the need to make major lifestyle changes after realising the limitations of conventional surgical and medical treatments. "It's either suicide or stand and fight" she said "make your lifestyle changes, use medication to help you if it can, reach out for help and admit you can't do everything." 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 realised afterwards that it's just not funny" she said. "And for a start heaps of women with endometriosis can't get pregnant anyway." Jane, who had been misdiagnosed with irritable bowel syndrome, raised the issue of endometriosis after her husband recognised 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.
"These women's stories were characterised by a determination to seek and use a wide range of suggested lifestyle modifications in their everyday life" says Professor Huntington.
This included a healthy caffeine-free diet with a high fruit and vegetable content and fewer high oestrogen foods such as dairy products.
But the women still needed medical intervention to control the pain of the condition.
"The development of chronic pain management services for women with endometriosis is long overdue" adds Professor Huntington.
"Our study found that although the pain of endometriosis can be severe and unrelenting, our interviewees reported that advice and support from health professionals was limited to surgical and hormonal remedies.
"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."
The names of the women taking part in the study have been changed to protect their anonymity.
Source: Eurekalert & othersLast reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
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