Researchers call for better recognition and pain management of endometriosis

October 12, 2005

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.
    -end-
    For further information and a copy of the full paper please contact Annette Whibley, Wizard Communications wordwizard@clara.co.uk

    Notes to editors

  • A life shaped by pain: women and endometriosis. Annette Huntingdon, Association Professor and Jean A Gilmour, Senior Lecturer, Massey University at Wellington, Wellington, New Zealand. Journal of Clinical Nursing, volume 14, pages 1124 - 1132 (October 2005).

  • Founded in 1992, Journal of Clinical Nursing is a highly regarded peer reviewed Journal that has a truly international readership. The Journal embraces experienced clinical nurses, student nurses and health professionals, who support, inform and investigate nursing practice. It enlightens, educates, explores, debates and challenges the foundations of clinical health care knowledge and practice worldwide. Edited by Professor Roger Watson, it is published 10 times a year by Blackwell Publishing Ltd, part of the international Blackwell Publishing group.

    Blackwell Publishing Ltd.

    Related Pain Articles from Brightsurf:

    Pain researchers get a common language to describe pain
    Pain researchers around the world have agreed to classify pain in the mouth, jaw and face according to the same system.

    It's not just a pain in the head -- facial pain can be a symptom of headaches too
    A new study finds that up to 10% of people with headaches also have facial pain.

    New opioid speeds up recovery without increasing pain sensitivity or risk of chronic pain
    A new type of non-addictive opioid developed by researchers at Tulane University and the Southeast Louisiana Veterans Health Care System accelerates recovery time from pain compared to morphine without increasing pain sensitivity, according to a new study published in the Journal of Neuroinflammation.

    The insular cortex processes pain and drives learning from pain
    Neuroscientists at EPFL have discovered an area of the brain, the insular cortex, that processes painful experiences and thereby drives learning from aversive events.

    Pain, pain go away: new tools improve students' experience of school-based vaccines
    Researchers at the University of Toronto and The Hospital for Sick Children (SickKids) have teamed up with educators, public health practitioners and grade seven students in Ontario to develop and implement a new approach to delivering school-based vaccines that improves student experience.

    Pain sensitization increases risk of persistent knee pain
    Becoming more sensitive to pain, or pain sensitization, is an important risk factor for developing persistent knee pain in osteoarthritis (OA), according to a new study by researchers from the Université de Montréal (UdeM) School of Rehabilitation and Hôpital Maisonneuve Rosemont Research Centre (CRHMR) in collaboration with researchers at Boston University School of Medicine (BUSM).

    Becoming more sensitive to pain increases the risk of knee pain not going away
    A new study by researchers in Montreal and Boston looks at the role that pain plays in osteoarthritis, a disease that affects over 300 million adults worldwide.

    Pain disruption therapy treats source of chronic back pain
    People with treatment-resistant back pain may get significant and lasting relief with dorsal root ganglion (DRG) stimulation therapy, an innovative treatment that short-circuits pain, suggests a study presented at the ANESTHESIOLOGY® 2018 annual meeting.

    Sugar pills relieve pain for chronic pain patients
    Someday doctors may prescribe sugar pills for certain chronic pain patients based on their brain anatomy and psychology.

    Peripheral nerve block provides some with long-lasting pain relief for severe facial pain
    A new study has shown that use of peripheral nerve blocks in the treatment of Trigeminal Neuralgia (TGN) may produce long-term pain relief.

    Read More: Pain News and Pain Current Events
  • Brightsurf.com is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.