Endometriosis in the Australian media

Erin Bradshaw researches Endometriosis using Trove
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As a journalism academic, and as someone who suffers from endometriosis, I always take note of when endometriosis is in the news. Research has found that knowledge of endometriosis is still limited, and the news is such an important resource for the general population to access health information, and for scientists and health practitioners to use the news to communicate science and health research.

So, what is endometriosis?

Endometriosis is a chronic inflammatory disease in which tissue that is similar to that of the lining of the uterus grows outside of it, latching and growing on other parts of the body. Commonly, this similar tissue is found on the bladder, bowels, and other pelvic organs, however it can also be found in the lungs and brains of some patients. All of this is incredibly painful when menstruating, as the similar tissue tries to shed itself and has nowhere to go, commonly causing blood-filled cysts that are prone to bursting.

More than 830,000 Australians suffer from endometriosis and is reported to cost society $9.7 billion annually. Symptoms of this disease include life-impacting pain, irregular bleeding and in some cases, infertility. There is no cure. Whenever my endo flares, I very often have to take time off work or take extended ‘lunch’ breaks to deal with how bad the pain impacts me. I work from home part-time for this reason. But that’s exactly when the idea hit me. How long has Australian news talked about endometriosis? Who do they talk to? How do they present the disease? Do they mention the pain? Do they mention the life impacts?

Trove was my first pick for looking for data for this study. An Australian-centric database of newspapers that was easy to navigate and easy to download everything I needed. It was a no-brainer. Searching was simple; putting 'endometriosis' as a search term meant I got newspapers, magazines, government gazettes and library books. From a first search of 204 items, I was able to filter out the things I didn’t want to focus on, like government gazettes and library books.

In all, I was able to find 80 different examples of endometriosis mentions in Australian press. My full article spells out more of my research, which found the Australian press tend to focus more on the infertility aspects of endometriosis, and less about the pain. The press over the years focused more on talking to medical experts about endometriosis and were more likely to be written about in feature stories and articles rather than hard news. I also have an article on The Conversation writing about the coverage during the 1970s.

I’m now going to split this blog into sections based on the items I found the most interesting when doing my research.

The oldest mention of endometriosis – Catholic Weekly (1949)

While the name of the disease ‘endometriosis’ was coined in the 1920s, it is almost 1950 until the term appears in the Australian press. According to Trove, the first English-language publication in Australia using endometriosis as a term was in a 1949 article in Catholic Weekly.

The Catholic Weekly is a Sydney-based newspaper. Originally named The Freeman’s Journal, it changed its name to Catholic Freeman’s Journal in 1932, then to its current name in 1942 after merging with another catholic paper The Catholic Press.

The Catholic Weekly’s article reports on the Southern Medical Association 43rd annual general meeting in Cincinnati, where two physicians mentioned birth control as the reason for disease and infertility in women. From the get-go, it’s within the issue of fertility that endometriosis is first mentioned, blaming women’s life choices for the development of the disease.

“… the hectic pace of modern woman’s life is responsible for the rise in endometriosis, one of the most crippling of female diseases.”

The article goes on to report that the cause of endometriosis is “…the use of contraceptives, delaying the normal function of childbearing.” This is ironic, as birth control was – and still is – widely used to curb endometriosis symptoms. However, results vary from person to person, and many get burdened with the side effects from both endometriosis and hormone-based therapies.

“Other than pregnancy,” the article continues, “there is little the medical profession can offer these women in a conservative, non-surgical way.”

An image of the article in Catholic Weekly
The first mention of endometriosis in Trove, Catholic Weekly (Sydney, NSW), 8 December 1949, nla.news-article146737743

Pregnancy and endometriosis have a very long-intertwined history with one another and the two appear frequently together in the Australian press throughout the 20th century. While endometriosis treatment has evolved beyond ‘get pregnant’, patients are still reporting that general practitioners in Australia are ‘prescribing’ pregnancybelieving that it relieves or even cures the disease.

Australian Women’s Weekly

There’s no denying that Australian Women’s Weekly (AWW) was a cultural touchstone of Australia during the 20th century, and never shied away from talking about big health topics. Endometriosis is first mentioned in The Australian Women’s Weekly’s (AWW) 1969 article in a feature on the pill, with gynaecologist Robert W. Kirstner answering reader’s questions on the new contraception. Dr. Kirstner mentions endometriosis twice across this article. The first is during a question about the Pill causing blood clots and (occasionally) death.

“I have prescribed contraceptive pills both before and after surgery I have performed for endometriosis. In over 300 patients so treated, none has developed thrombophlebitis or pulmonary embolism.” (AWW 1969)

The second while answering a question about taking the Pill continuously.

“…I have treated patients for certain diseases such as endometriosis (where the tissue that lines the uterus extends its growth to the tubes, ovaries, bowel, and bladder), by having them take the Pill continuously for as long as two years and during this time they had no menstrual periods. (This method of treatment is often referred to as “pseudopregnancy”)… (AWW 1969).

Image of the article in the Australian Womens Weekly 1969
The Australian Women's Weekly, 17 September 1969, nla.news-article48083595

A 1975 feature story in AWW presents a couple who sought to have a baby under difficult conditions – off the back of double kidney transplant, as well as endometriosis.

“When a Sydney girl was told that, because of her medical history, it was unlikely she could ever have a child…until the unbelievable happened. She became pregnant…” (AWW 1975)

Image of article in the Australian Women's weekly with photos of the new parents and baby
The Australian Women's Weekly, 29 January 1975, nla.news-page4468731

Later in the 1970s, the AWW published three articles about hysterectomies (AWW 1976 , 1979). Today, hysterectomies are offered as a treatment option for patients, but the disease is known to continue to grow inside the body despite the procedure.

Classifieds: the beginning of self-help groups?

I’ll forever be thankful that Trove includes the classifieds section in their newspaper archive preservations. It was here I was able to find amazing examples of community-led self-help groups for endometriosis beginning to sprout. The classifieds I collected gave me a good amount of evidence that at a grassroots level across Australia, patients were forming communities of knowledge building and fellow understanding. While today we currently have some amazing social media groups to share our stories and seek understanding, creating patient groups used to be much more hands-on.

Not only is it important for endometriosis patients to understand how the media talk about the disease, it’s also important historically for us patients to know and appreciate how long support groups have existed for us to find commonality and solidarity with each other. Endometriosis support groups are well overdue to have someone record their histories, and I look forward to any future attempts to record this.

The Tribune’s ‘what on’ section shows the first instance in this analysis of a community-based program surrounding endometrioses; a ‘public forum’ on endometriosis run by the Leichhardt Women’s Health Centre.

Image of the Classifieds page
Tribune (Sydney, NSW), 29 April, 1987, nla.news-article259555983

But it doesn’t stop there. I was able to see groups sprouting in Canberra as well as one forming on Thursday Island.

Thursday Island’s paper Torres News reports on a volunteer support group called the Endometriosis Association giving women the opportunity to learn more about the disease and the steps to take for treatment.

Image of article in the Torres News
Torres News (Thursday Island, Qld.), 8 January 1993, nla.news-article255512757

Looking at the history of endometriosis coverage in Australia was a fascinating project, and I’ll be continuing my research into it in future. With each new set of newspapers and magazines that come on board to be digitised and uploaded into the archives comes the chance to discover more about how we’ve reported on this chronic and debilitating disease.