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Consumer correspondent
Endometriosis: the bloggers’ tales
  1. Susan Quilliam
  1. Writer, Broadcaster, Consultant and Trainer, Cambridge, UK
  1. Correspondence to Ms Susan Quilliam; susan{at}susanquilliam.com; http://www.susanquilliam.com

https://doi.org/10.1136/jfprhc-2014-100907

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    Background

    To bridge the gap – that’s what my brief for the Journal has always been. To create understanding between reproductive health professionals and health service consumers – to help the former appreciate the needs of the latter. This is why I often base my columns directly on the experiences of end-users: women patients with cervical cancer, teenage students needing sex education, purchasing customers using pharmaceutical services, being recent examples.

    But when the Journal Editor recently tasked me with writing about endometriosis (Box 1), I found myself unexpectedly log-jammed. Despite the fact that over 170 million women worldwide suffer, I knew no one with the condition. I didn’t even know anyone who knew anyone with the condition. And the devoted user-organisations couldn’t deliver me the numbers of globally-based, first-hand accounts that I ideally needed.

    Box 1

    Facts about endometriosis

    • Around 176 million women worldwide are thought to be affected by endometriosis.

    • Endometriosis occurs when tissue that behaves like the endometrium is found outside the womb – commonly in the ovaries and in the peritoneum behind the uterus and around the upper vagina. Given no outlet, this tissue can cause inflammation, scarring and adhesions.

    • The causes of endometriosis are unclear but may be down to retrograde menstruation, Müllerian tissue remnants, coelomic metaplasia or vasculogenesis.

    • Although some women are symptom-free, common symptoms include painful periods, heavy periods and chronic pain in the lower abdomen, pelvis or lower back.

    • Endometriosis can cause severe fertility problems either just by its presence or if it damages the Fallopian tubes or ovaries.

    • There is no known curative treatment, but symptom management includes painkillers; hormonal treatments; ablation or surgery, support and counselling.

    • Further information is available at http://www.endometriosis.org, a global forum listing all known endometriosis support worldwide; in the UK the main support body is http://www.endometriosis-uk.org. …

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    Footnotes

    • Author's note The quotations are taken from blogs written by women who suffer from endometriosis. My thanks to them and to all the bloggers whose work I read.

    • Competing interests None.

    • Provenance and peer review Commissioned; internally peer reviewed.

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      British Medical Journal Publishing Group
      BMJ Sexual & Reproductive Health 2014; 40 79-79 Published Online First: 19 Mar 2014. doi: 10.1136/jfprhc-2014-100920