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7th December 2015

How a journalist’s struggle with endometriosis turned into a global media campaign

When Gabrielle Jackson suggested writing a column about her experience with this debilitating disease, she discovered that many of her female colleagues at Guardian Australia were silently suffering from endometriosis, too. The next thing she knew, a global awareness campaign was born.

It started as a discussion with Gabrielle’s boss, who was “incredulous that 1 in 10 women suffer from this disease and yet she knew so little about it,” Gabrielle told This Is Medtech. Recognising the issue as a much bigger story than one person’s battle, editors at the three Guardian offices in London, New York and Sydney co-ordinated a global campaign.

“We put up a global call out asking women to share their stories. We had to take it down in less than 24 hours because we received more than 600 testimonies and were overwhelmed with the response,” said Gabrielle, the 38-year-old opinion editor for Guardian Australia. “Quite apart from being the ‘silent disease’ as it is called (because nobody knows anything about it), we found a very vocal community of women who had been trying their hardest to tell their stories but had been hampered at every level,” she added.

What exactly is endometriosis, then?

It’s a condition where tissue similar to the lining of the womb (endometrium) grows outside the womb, most commonly in the pelvic cavity, which can cause cysts and adhesions, and in some cases can fuse organs together, explains one Guardian article on the topic.1 The most common symptoms are severe period pain, irregular and/or heavy periods, pain during intercourse, diarrhoea or constipation, fatigue and nausea. Infertility is a common side effect.

Endometriosis affects about 176 million women of childbearing age worldwide. In addition to having a huge impact on a person’s day-to-day life, it can be extremely frustrating because complaints from women suffering from the disease are often dismissed by doctors as ‘just normal period pain’. It takes an average of 8.5 years from first symptoms to diagnosis, which requires a surgical procedure called a laparoscopy.

Gabrielle’s story bears witness to this. “In 2001, at 24, and after eight years of complaining to several different primary care doctors of period pain that didn’t ‘feel normal’, I insisted on a referral to a gynaecologist. My general practitioner, who memorably told me that ‘some women have bad period pain, that’s life’, reluctantly gave me one,” she recounts in another Guardian article.2

Gabrielle felt lucky that her specialist had good knowledge of endometriosis. “He immediately suspected endo and performed a laparoscopy, which turned into a laparotomy (where a surgical incision into the abdominal cavity is made) after a marathon surgery to remove lesions and adhesions that had fused my uterus, bowel and rectum together,” she writes.

Though her period pain improved for quite a while after the operation, Gabrielle spent the next 14 years confronting various other health issues including digestive problems, nausea, severe back pain, fatigue and lethargy, which she didn’t realise were all related to the endometriosis. The penny dropped when she went to a conference on the issue, where for the first time ever, specialists and patients were gathered in the same room to discuss it. She cried the entire bus ride home, then cried on the phone to her mother, her sister and her friends. She says “I had to tell them all: ‘I’m not a hypochondriac! I have a disease! All these things that are wrong with me are real, they are endometriosis!’”

When the Guardian campaign kicked off in September, Gabrielle was getting ready to freeze her eggs in preparation for surgery that will likely leave her infertile. She admits to being embarrassed about sharing the intimate details of her life with the world, but says that she and her colleagues are “thrilled with the positive response we received from all corners of the earth”.

All of the Guardian’s campaign articles and testimonies on endometriosis can be found here.

Endometriosis affects one in 10 women worldwide: are you one of them?, ©Guardian News & Media Ltd.

I’m not a hypochondriac. I have a disease. All these things that are wrong with me are real, they are endometriosis, ©Guardian News & Media Ltd.