‘It was crippling’: New endometriosis plan aims to save women from years of agony

Lilia Tennant still remembers being curled up on the floor of a store on Chapel Street with agonising abdominal pain.

Tennant was 13, shopping with their mother, and days away from getting their first period.

“It was pretty crazy, I literally fell to the floor the pain was so bad,” the now 22-year-old said. “It was a sign of what was to come.”

It would take more than six years for doctors to finally diagnose Tennant with endometriosis, a chronic, inflammatory condition in which tissue similar to the inner lining of the uterus grows in other parts of the body, causing episodes of severe, often crippling pain.

Doctors initially brushed off Tennant’s debilitating abdominal symptoms as muscle pain due to running.

“It was crippling. I literally had terrible pain my entire menstrual cycle and the days leading up to it and my doctors almost didn’t even bring up menstruation or period-related issues as even an option of being the cause of this,” the pharmaceutical science student said.

“I found I had to do all the research and the work myself to understand what was going on in my body.”

Despite endometriosis affecting an estimated one in seven Australian women, it takes an average six to eight years for the condition to be diagnosed.

But under Australia’s first national endometriosis management plan, being launched on Thursday, people like Tennant will no longer have to wait years for a formal or surgical diagnosis via a laparoscopy to begin managing their pain properly with their general practitioner.

Project lead Professor Danielle Mazza said the online plan, which was co-designed with people living with endometriosis and pelvic pain, aims to raise the standard of care and treat the condition like any other serious, chronic and debilitating illness.

“Women and doctors still haven’t really conceptualised endometriosis as a chronic disease, but that’s exactly what it is,” Mazza, who is head of Monash University’s Department of General Practice, said.

“We don’t have a cure so what we’re seeking to do is detect it really early and manage the symptoms far better to try and avoid the long-term complications of the condition, which is really what we do with any chronic disease like diabetes or arthritis.”

Severe long-term complications include infertility, chronic pelvic pain and potential impairment of neighbouring organs.

Many women report being ignored, dismissed or belittled when they seek care for their symptoms.

“Symptoms can be complex, non-specific and vary from person to person,” Mazza said.

“We want patients to understand their condition, know what their options are, and have a clear management plan they can return to and review with their GP, rather than feeling hopeless and like there they have nowhere to turn.”

The chronic and progressive nature of the condition also frequently inflicts significant psychological and financial strain on women.

Mazza said every woman will be able to get the health management plan through their GP, which will be available online after their appointment and personalised depending on symptoms.

It includes the most effective, non-pharmacological treatments alongside evidence-based medications.

It will also give women access to Medicare subsidised allied health services, such as physiotherapy, mirroring what Australians with other chronic illnesses have access to.

Tennant’s endometriosis was finally confirmed with an ultrasound at age 19.

The disease was so far advanced they were in an operating theatre within weeks, and it took almost a year for them to feel back to normal.

Tennant welcomed the national endometriosis management plan and hoped it would put the condition at the forefront for healthcare professionals diagnosing and treating it.

“It takes the burden from the patient of having to do all the work themselves and advocate to have their symptoms taken seriously,” Tennant said. “As a teenager, I would have loved something like this.”

Mazza said the document will also give women self-management guidance and online tools to be able to track their symptoms, measure the severity of their physical pain, menstrual bleeding and mental health as well as supporting them to reach their fertility goals.

“I’ve got patients who have suffered terribly and had awful chronic pain that stopped them from living their lives and doing what they want to do,” she said.

Mazza said more research was urgently needed to determine whether starting teenagers on early treatment can offset long-term harm and complications.

Royal Australian College of General Practitioners president Dr Michael Wright said the new model of treatment had the potential to change lives.

“Too many Australians living with endometriosis spend years seeking answers, often while managing significant pain and disruption to their daily lives,” Wright said.

“By supporting earlier management, shared decision-making and co-ordinated multidisciplinary care, this initiative has the potential to improve health outcomes and quality of life for people.”

Monash University research showed the proportion of women presenting to GPs with endometriosis has almost doubled in recent years.

Doctors across Australia will receive training on the new model of care which was developed by Monash University’s SPHERE Centre of Research Excellence and GP college and funded by the federal government.

The nation’s first Inquiry Into Women’s Pain this year found that many women had been gaslit by medical professionals or made to feel at fault when asking for medication for their pain.

Of 13,000 women who shared their experiences with the eight-month process, 90 per cent of respondents experienced pain that lasted over a year, with 54 per cent experiencing it daily.

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