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‘Are you telling me it’s all in my head?’ Endometriosis in the Australian press in the 1970s

In 1974, Woroni, the student magazine of the Australian National University, published an article looking at the lives of lesbians at the university.

One contributor, “Jody”, told of her experience with a doctor who pressured her for details on how she has sex, and who didn’t believe her reports of pain, suggesting it may be “in her head”.



Jody recounted asking the doctor:

‘Are you telling me that I didn’t get endometriosis from a rotten abortion six years ago, that it’s all in my head?’ He quickly retreated and admitted that he knew I had endometriosis and that wasn’t psychological.
It’s important to state categorically you cannot get endometriosis from an abortion, despite what Jody believes caused her endometriosis.

But beliefs like this weren’t alone in the Australian press in the 1970s. It appears from both Jody’s story, and from another articlepublished in the 1960s, it may have been public opinion abortions could result in endometriosis.

As an academic and sufferer of endometriosis, I wanted to know what the history was behind my own disease. How long ago did we start talking about endometriosis?

I went looking in the Trove archive to see how long endometriosis has been talked about in Australian newspapers and magazines, and how it was being written about. The earliest article I found was from 1949, but the 1970s was the first decade we saw endometriosis really being discussed by name in newspapers and magazines.



What is endometriosis?​

Endometriosis is a condition in which tissue similar to the lining of the uterus grows outside the uterus, around other parts of the body.

It affects more than 830,000 Australians and costs Australia $9.7 billion annually in direct medical costs and in lost productivity.

Despite these numbers, many people still don’t know about endometriosis.

Historical texts suggest endometriosis has been around for a very long time. Its most common symptoms of pelvic pain, adhesions and infertility were written about as far back as 1855 BCE.

Doctors were able to identify the disease microscopically in 1860, and it was named endometriosis in 1927 by gynaecologist John Sampson.

A 'frequently occurring’ disease​

I was able to find 12 articles mentioning endometriosis in the Australian popular press of the 1970s. Compared with earlier decades, the disease was now being talked about in personal stories alongside comments from experts.

Endometriosis was often talked about as a comorbidity to infertility, with other symptoms such as pain taking a backseat. Medical experts were the most common people quoted in articles.

Leading up to the 1970s, medical research into endometriosis had established it could grow on the lungs, lymph nodes and the bowels, among other organs. Treatment for the disease during this time was often hormonal therapies, excisions or hysterectomies.

Screen Shot 2023-03-13 at 13.01.52.png
Hysterectomies was one of the treatment options for endometriosis.
Queensland State Archives

During the 1970s in Australia, news was circulating about Danocrine (also known as Danazol) – a hormonal treatment to combat menstruation pain. Both The Canberra Times and the Australian Women’s Weekly wrote about this “capsule that could end menstrual pain”.

A 1975 feature story in Australian Women’s Weekly presented a couple who sought to have a baby under difficult medical circumstances, including endometriosis. The narrative used in the story is one of fertility “miracles” and impossible odds to clear to become a mother:

When a Sydney girl was told that, because of her medical history, it was unlikely she could ever have a child, she and her husband began talking of adopting – until the unbelievable happened. She became pregnant.

The relationship between pregnancy and endometriosis has a long history, and frequently appeared together in the articles I found. Pregnancy as a cure or symptom suppressor has been around since the Ancient Greeks. Indeed, the first mention I found of endometriosis in the Australian press, an article in Catholic Weekly in 1949, touted pregnancy as the only nonsurgical and “conservative” option for treatment.

(Despite medical research saying pregnancy is not a cure for endometriosis, patients are reporting GPs are still “prescribing” pregnancy in the incorrect belief it relieves symptoms or even cures the disease outright.)

Screen Shot 2023-03-13 at 13.03.07.png
Pregnancy was often cited as a ‘treatment’, but the science doesn’t support this view. Queensland State Archives,
CC BY-NC-ND

The Australian Women’s Weekly appeared often in my data collection. The magazine did not shy away from talking about topics like the contraceptive pill, infertility and hysterectomies. The magazine published three separate articles on hysterectomies during the 1970s, reassuring readers they’d still be “all woman”.




Learning from our past​

What can we learn from historical news articles? In my opinion, a great deal.

Press coverage of diseases plays a huge role in the public’s understanding of a disease. By better understanding how endometriosis was perceived in previous decades, we can identify useful patterns of reporting and make sure the information presented on the disease today is accurate and helpful.

Today, media coverage about endometriosis is more likely to look at endometriosis through new lenses such as its chronic pain, the cost of treatments and loss of productivity.

And unlike in the 1970s, where medical voices were the primary source, now the patient’s voice is front and centre in these stories.



This article was first published on The Conversation, and was written by Erin Bradshaw, Research Assistant, Monash University
 
Endometriosis is a debilitating condition. I've known women with it. It does come with mild to serious symptoms. I've only known one person with it being serious, that she couldn't have children. She had to have a hysterectomy in her 20's, to stop it spreading to her bowels and internal areas. This helped. I haven't kept in contact with her, as she moved away and we lost touch, so not sure how she is these days.
 
It looks like my youngest daughter could have it, we are going for test on the 27th of this month.

She has always had severe period pain but over the past 2 years her pain is just about there every day not just with her period.

It's heart wrenching seeing the pain she us in. She is only 18 and also suffers chronic lung disease .

A close family friends daughter inlaw has severe Endometriosis is in and out of hospital due to pain . She has had so many surgeries.

She has been trying to get pregnant for the past 10 years and sadly her chance of getting pregnant isn't very high.

This is what worries me with my daughter, she loves children and will make an awesome mother.

She is at Uni now to become a paediatric nurse
 
I had a pregnancy and was diagnosed with Endometriosis a few years later. I had never been in the pill and being married at 19 was wondering why I couldn't fall pregnant right away. It took 12 months. I was told it was surprising U had the disease after pregnancy or that I could fall pregnant at all.

I was very fortunate that when I told my GP about the pain he referred me to a gynaecologist who made a quick diagnosis. However, as I then became a patient at the Mater I endured years of laparoscopies and then came the trials of Dep Provera injections whichas was just awful. Eventually my Specialist referred me to the PA Hospital. I had a hysterectomy and because the surgeon at that hospital did not do as requested, remove both ovaries I was back in a few months later for an ooferectomy to remove the other ovary as a mere spec of endo attached itself to the other ovary.

I was one of the fortunate ones to have it discovered so quickly in 1980. I didn't complain if the pain until my car walked in my abdomen whilst I was napping. That's when I realised something was amiss.

Josie
 
I was in hospital when a severe pain started in my left side of my chest. When I sat up to get ready for visiting hours, the pain worsened. My mother, when she arrived asked at least three different nurses to get a doctor, only to be told I was putting it on because she was there. They ended up giving me an injection that I was allergic to, and I had already asked the doctor not to give me. I went to sleep and then ssat up getting ready for visiting hours again that night. The pain in my stomach was horrendous, I could hardly breath. My mother was told the same story when she went to ask for help. "She is only putting that on because your here." They finally gave me a double dose of morphine and the Specialist came by about 8 pm that night. He loo9ked at me for about 5 minutes, and went out of the room for about 5 minutes and then came back and asked "Are you sure you had a pain?" By that time I had been out to it for over an hour and was so weak I could hardly talk. All I could do whas to nod my head. The first pain ended up being a collapsed lung, and while I was in the Xray room I was maualed by one of the attendants. I was too sick to do anything about it. The second pain ended up being a burst lining of my stomach because of the injection the doctor had precribed that I was allergic to. It is not only the deoctors who say it is all in the head, it is nurses as well. I often wonder if it is only females that are treated like this. I'm afraid I do not have any confidence in treatment or diagnosis in hsopitals. Another time I went to Emergency with horrendous paid in both groins. I was sent home and told to take panadol. I replied that I may as well hqave a drink of water than take Panadol, but they didn't take any notice. My pain ended up being lymphoma. Another time , after chemo, I went to Emegecncy again in the closest hospital, with terrible pains in the groins again. I was sent home to take panadol. The pain didn't go away so a friend drove me to the next closest hospital. This occurrred twice more "Go home an take panadol".
The third time I went to Emergency again, and then they decided to take Xrays and found I needed to have a colonoscopy. The paind finally went away. The health system, nurses and doctors are their own worst enemies by not doing the tests in the first place.
 
My daughter has had it all her adult life - it has ruined her ability to have a relationship or a pregnancy or to even hold down a job!
It has completely defined her life and finally she got endometrial cancer last year. She can’t have a hysterectomy due to the layers of adhesions around her uterus and still suffers the worst pelvic pain. It’s a horrible disease!
 
I went on the pill at 16. Developed bad pain on and off. At 21 tried getting pregnant with first husband, never happened. Tried with second husband at 33, over a year and a half had two miscarriages. After second miscarriage had to have a curette. While during procedure found I had severe endometriosis which was removed at the same time. Six months later I fell pregnant, had a baby boy. A year after, I asked doc when it would be best to try again and was advised to try sooner than later due to past endometriosis and it might take 12 months to conceive again. So we tried again however I was pregnant 6 weeks later and had a baby girl. Since then i thankfully have been free from pain, I am now 64. I feel that for some women a curette and removal of any endometrial tissue might allow for the now new/ripe lining of the uterus to do it’s thing😊
 
I was one of the lucky ones. Although I suffered with bad period pain from the start I was able to have my two boys. Things got worse after and the pain was dreadful. I had to plan my life around my periods. I eventually had a hysterectomy in my forties, I wish I’d had done it ten years earlier! After one surgery the dr rang me and said ”I’m happy to tell you you don’t have cancer, it was so messy in there we thought you did”. The dr after my hysterectomy told me the endo had spread onto my bowels and other organs. I can’t believe I put up with it for so long
 
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