Endometriosis: Health system ‘oblivious to suffering’ of one in 10 women affected by ‘silent epidemic’
By Kathryn Perrott
Updated Thu at 9:58pm
With one in 10 women affected by endometriosis, chances are you know a woman who has it.
- No dedicated medical professional for endometriosis, women “have to become own expert”
- Endometriosis as common as asthma and diabetes
- In 2016, NHMRC allocated $14.7m to asthma research, $64.1m to diabetes research, $837,433 to endometriosis research
But, given it takes an average of seven to 10 years to diagnose the disease experts call the “silent epidemic”, she may not even know she has it.
And advocates say she will almost certainly be forced to become a self-taught expert on the incurable disease — because there is no such thing as an endometriosis specialist, and not enough money is spent on research.
Women with endometriosis cannot receive a complete treatment from one doctor because of its “complicated maze of symptoms” — including pelvic pain, heavy or irregular periods, bowel and bladder symptoms and fertility problems, Pelvic Pain Foundation of Australia director Dr Susan Evans said.
“There is no area of medicine that feels completely trained to cover all the aspects of a woman with endometriosis’s care,” Dr Evans said.
“It’s up to women … to learn themselves to recognise what’s happening.
“[But] it is very hard for a lot of women to learn all that by themselves.”
She said that, along with a lack of public awareness, meant women were “falling through the cracks”.
Doctors unfamiliar with endometriosis
Many women have never heard of endometriosis, and some think their symptoms are “just part of being a woman”, Dr Evans said.
But doctors are also often unfamiliar with the disease, in which tissue similar to the lining of the uterus grows in other parts of the body, and they may not recognise it in patients — leading to a delay in diagnosis, she said.
“Any experience with a GP was pretty horrible,” endometriosis patient Ashleigh Knight, 31, said.
- Unusually intense period pain
- Pain on or around ovulation
- Bowel or bladder problems
- Heavy or irregular bleeding
Source: Endometriosis Australia
“No-one believed me and they all made me out to feel like I was exaggerating and being a drama queen. One doctor actually told me to ‘get over it’.”
Dr Evans said before many women are diagnosed with endometriosis, they visit hospital emergency departments, concerned about their pain.
But she said most emergency department staff do not recognise their symptoms and women leave “dissatisfied … with no explanation and a lot of embarrassment and fear”.
“They do the standard things to try and check that there’s not something life-threatening, they find nothing much, and unfortunately she goes home none the wiser,” she said.
Australian mother Lesley Freedman and her daughter Sylvia founded not-for-profit charity EndoActive after Sylvia’s diagnosis with endometriosis, when they said they encountered a health system that “appears to be oblivious to their suffering”.
“[There is] very little awareness or understanding in the community or in places where you would expect to find it — educational institutions, hospitals, ambulance services and general practice,” Ms Freedman said.
“Women and girls are routinely turned away from emergency without pain relief or further investigation.”
But, even when doctors do recognise endometriosis in a patient and refer them to a gynaecologist, diagnosis can only be made through laparoscopic surgery and there is no cure.
There are however treatments for the symptoms, including laparoscopic surgery to remove affected tissue, hormonal treatments and pain-relief medication.
Dr Evans said it is not even known for sure how endometriosis grows in a woman’s body.
“No-one’s 100 per cent sure, but things are getting closer,” she said.
Pain so bad I wanted to die.
Endometriosis affects one in 10 women, but few know what it is and many go undiagnosed for years. For Endometriosis Awareness Month, Kathryn Perrott shares her story.
Endometriosis as common as asthma, diabetes
Scientists are working to find answers — but, although it is as common as asthma and diabetes, endometriosis is allocated only a fraction of the millions of dollars they each receive in research funding.
Last year, the National Health and Medical Research Council (NHMRC) allocated more than $14.7 million to asthma research and $64.1 million to diabetes research.
Only $837,433 was allocated to endometriosis research.
The NHMRC received a single grant application for endometriosis research in 2016, which was approved for $1.2 million over four years, a spokesman said.
The recipient, the Royal Women’s Hospital and University of Melbourne’s Professor Peter Rogers, who is studying endometriosis’s genetic component to find its cause, pointed to low awareness as a reason for its lack of funding.
- There is no cure
- Hysterectomy is not a cure
- Pregnancy is not a cure
- It does not always cause infertility
- Diagnosis can only be made via surgical intervention
- Endometriosis pain does not only occur during periods
Source: Endometriosis Australia
“Once you get the disease out there, so there is an understanding and awareness, then it’s easier,” he said.
While the NHMRC allocated funding “in a completely objective way”, researchers needed money to gather data before applying, he said.
“To get funding, you have to work on it for a while. You have to get data first — you have to have funding to get started.
“There’s not enough good grants for endometriosis going forward.
“We’ve been good at getting rid of pain and suffering in other areas, but we haven’t done such a good job in this one.”
Efforts are being made to better educate medical students — as well as girls in high schools — to recognise the signs of endometriosis, Dr Evans said.
Meanwhile, EndoActive held a national conference in Sydney in 2015, bringing together patients and experts from around the country, with another one in the works.