She’s sixteen years old and she’s screaming.
“Mum, mum help me, please help me. Mum, please. I’m going to die.”
“Around one in ten women suffer endometriosis. Which is slightly more than the number of men who suffer erectile dysfunction.”
Sobbing and terrified, she’s doubled over in pain. “Why is this happening, make it stop, mum, help me, please mum.” As she cries and pleads, her mother is trying to stay calm and offer comfort while she uses a phone to film what’s happening.
This is what endometriosis looks like. Excruciating pain, fear, helplessness and the surreal things women do to have their pain taken seriously.
The video, shot last month, is almost unwatchable. A panicked, pain-ridden child sobbing on and on. They’ve been to five different doctors. The girl has been tested for food intolerances (negative), treated with antibiotics (useless) and recommended for hypnotherapy (laughable). Doctors have suggested she might have Irritable Bowel Syndrome or “it might just be anxiety”. It wasn’t until she started using a period tracker that they made the connection between her pain and her menstrual cycle.
The only thing unusual about this story is that a diagnosis happened relatively early. The average wait to diagnose endometriosis is ten years.
Endometriosis is a condition in which tissue similar to the lining the womb grows outside of the womb. The tissue starts bleeding in response to the hormones that trigger a period and can grow on other organs like the ovaries, bowel and stomach, causing lesions and scar tissue. In some cases, the womb tissue can spread as far as the lungs and diaphragm. It’s painful, debilitating and has no known cause or cure.
Endometriosis hit the media again recently after Lena Dunham wrote about the hysterectomy she insisted on having because her condition was so debilitating. Most doctors warn that a hysterectomy is not always a cure for endo but without knowing the specifics of her symptoms and the procedure her doctors performed, it’s irresponsible to comment on the decisions she and her doctors made. She’s certainly not alone in her experience.
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Mary* is 35 years old. She first started showing symptoms of endometriosis when she was fifteen but wasn’t diagnosed until two years ago. She says it has taken everything from her. “I couldn’t go to school every day. I had to take at least a week off every month because I was in so much pain. I did get into uni but I had to drop out in second year. I was just too sick.” Mary says she can’t remember how many doctors she’s seen but after being told too many times that painful periods are “normal” and there was nothing wrong with her, she gave up. She spent years feeling shame that periods and what she was told was “a tendency to malingering” meant she had trouble holding on to jobs and seeing friends. Her last boyfriend broke off their relationship because he was sick of her “whinging”.
Mary’s story is typical of women with endometriosis. Dozens of women spoke about their experiences for this piece. Doing justice to all their stories would require a book not a single article, but the summary is simple: women are not considered to be reliable witnesses to their own pain.
This is not just anecdotal, it’s backed up by research. The University of Pennsylvania found that women are less likely to receive pain medication in emergency centres than men, and when they do get it they have to wait longer for it. Another study from the University of Rhode Island showed men’s pain is more likely to be treated with pain medication, women’s pain is more likely to be treated with sedatives.
When men are in pain it’s real, it needs treatment. Women in pain just need to calm down.
This is overwhelmingly the story of all the women who spoke about living endometriosis and the doctors who told them “period pain is normal”. They were told “it will settle down soon” or “sometimes women just have unexplained pain” or “it’s something all women go through”. They were told getting pregnant might cure it. (It doesn’t). Or changing their diet would fix the problem. (Dubious at best). They were made to feel responsible for finding their own cure. (Not reasonable or possible). They were accused of drug seeking and told they were “being a bit silly” and “it can’t be that bad” when they told doctors they were in so much pain they couldn’t stand, or sex was so painful it made them cry.
Christina Arnold was one of those women. “By the time I was diagnosed my bowel was fused to my uterus. By what possible medical definition is that normal?”
Dr Emma Readman is the head of one of the endosurgery units at the Mercy Hospital for Women and has been treating endometriosis patients for fifteen years. She says that, like any disease, early diagnosis is one of the most important factors in successful treatment. “Unfortunately, when women are told their pain is normal they sometimes believe it and accept it as part of being a woman. Endometriosis should be just the background to your life, it shouldn’t rule your life.”
Dr Sarah Holdsworth-Carson is a post doctoral research fellow with the University of Melbourne at the Royal Women’s Hospital. She’s an investigator on one of the very few endometriosis research projects in Australia, a four year study looking for possible genetic drivers behind the disease.
She says too many doctors don’t understand what “normal” period pain should look like. “Some level of pain, particularly in adolescence, is normal. But if it’s so bad you can’t go to school or work, if it’s interfering in your daily life, that’s not normal. Any woman who has pain that bad should insist on further investigation. If your doctor won’t respond, find another doctor.”
Dr Holdsworth-Carson says endometriosis frequently misdiagnosed, usually because it’s poorly understood and there is no simple diagnostic tool. Ultrasound can work but usually only with severe cases and only where a skilled radiographer is trained to recognise the lesions. “The only conclusive test is to see the lesions with a laparoscopy.”
Surgical treatment is complicated because surgeons rarely know the extent of the disease until they see it and surgery is so specialised that a gynaecological surgeon might not see or recognise lesions on the bowel or diaphragm. It’s not uncommon for women to have to undergo multiple surgeries to remove womb cells from different organs. In many cases the surgery is only a temporary fix as the cells can spread again after the operation.
Dr Sarah Holdsworth-Carson says there is very little understanding of the causes of endometriosis or how best to treat it. “It is an area of research extremely underfunded considering the prevalence of the disease amongst Australian women.”
Around 1 in 10 women suffer endometriosis. Which is slightly more than the number of men who suffer erectile dysfunction and about the same rate that men and women live with diabetes and asthma.
PubMed is a database of medical research. It currently lists 33,103 clinical trials on diabetes, 13,762 on asthma and 1,958 on erectile dysfunction. And 947 clinical trials studying endometriosis.
In 2016 the Australian National Health and Medical Research Council allocated more than $14 million to asthma research, $64 million to diabetes research and $837,433 to endometriosis research.
As long as men’s lives and bodies are the medical default women are going to continue to suffer inexplicable illnesses. That should make anybody angry.