For much of her adult life, Shannon Darwall has lived with intense pelvic pain.<\/p>\n
After years of visiting her GP without answers, in 2022 she was placed on the public waitlist for a suspected endometriosis diagnosis.<\/p>\n
With the average time for a diagnosis estimated to be seven years, the 27-year-old said it was hard not to feel forgotten by the system while waiting, especially as her pain had continued to worsen.<\/p>\n
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Shannon Darwall says she feels forgotten by the system. (ABC News: Jasmine Hughes)<\/p>\n
“A lot of the solutions are birth control, but every birth control I’ve tried \u2026 change my mental state and make me [feel] depressed,” she said.<\/p>\n
“I feel like I have to choose between physical pain and mental pain.”A chronic disease<\/p>\n
Perth gynaecologist and fertility specialist Tamara Hunter said Ms Darwall’s experience was not uncommon.<\/p>\n
She said the situation was made difficult by WA having just one tertiary endometriosis unit at King Edward Memorial Hospital (KEMH).<\/p>\n
“You have \u2026 to help manage two very significant diseases, mental health and endometriosis,” she said.<\/p>\n
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Tamara Hunter says more investment is needed to service endometriosis patients in the public health system. (ABC News: Jasmine Hughes)<\/p>\n
“All of these [public] patients are being funnelled into this one tertiary service.”<\/p>\n
A WA Health spokesperson said demand\u00a0for\u00a0endometriosis services at KEMH had increased, both in terms of the number of patients and the complexity of cases.<\/p>\n
“Improving access to public specialist outpatient services is a key priority, and work is underway through the state-wide Outpatient Reform Program to address this,” the spokesperson said.<\/p>\n
“This work includes initiatives focused on standardising access criteria for specialist services, streamlining referral processes, and developing, testing, and scaling innovative models of care.”<\/p>\n
The spokesperson encouraged waiting patients to remain in contact with their GP, and to seek an updated referral should symptoms worsen, so a hospital specialist could reassess the urgency of the case.\u00a0<\/p>\n
Specialist pain clinics<\/p>\n
Endometriosis is a chronic disease where tissue similar to the lining of the uterus grows outside of the organ, often resulting in severe pain or inflammation, and possibly impacting fertility.<\/p>\n
It is estimated one in seven women are affected by the disease.<\/p>\n
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An estimated one in seven women are affected by endometriosis. (ABC News: Briana Shepherd)<\/p>\n
There’s no cure, and the only way to receive a definite diagnosis is via laparoscopy \u2014 a minimally invasive “keyhole” surgery \u2014 which can also be used to relieve symptoms.\u00a0<\/p>\n
In 2018, the federal government released its National Action Plan for Endometriosis<\/a>, with millions of dollars invested or committed towards research, awareness and clinical care.<\/p>\n Endometriosis clinics working well but experts want more awareness<\/a><\/p>\n Lianne Williams is one of the many women with endometriosis who has had to fight to have medical professionals take her symptoms seriously. Clinics dedicated to treating the condition are becoming more common, but are they working?<\/p>\n Part of that investment has included funding for specialised endometriosis and pelvic pain clinics, of which there are 22 around the country, two of those in WA.<\/p>\n Additional funding was announced in February for a further 11 clinics across Australia.<\/p>\n But more are needed, Dr Hunter said, as well as more training for GPs in pain management.<\/p>\n “It’s not actually managing the disease; it’s managing the [human] being that is around the disease” she said.<\/p>\n ‘Nothing worked’<\/p>\n Kimberley Shepherd, 29, has been a patient in the private system since she was 17.<\/p>\n Despite this, Ms Shepherd said managing her pain and receiving a diagnosis had been difficult.<\/p>\n “My mum and older sister experienced what looked like really bad pain during their periods, I just assumed bad period pain was normal,” she said.<\/p>\n Kimberley Shepherd suffered with severe pain before she was treated for endometriosis. She is pictured with her dog Sansa.\u00a0 (ABC News: Briana Shepherd)<\/p>\n “They’d [doctors] never even suspected endo, despite the fact that I’d tried eight or nine different pills \u2026 and nothing worked with my heavy bleeding or my pain.”<\/p>\n It was not until she was rushed into emergency surgery for what presented as appendicitis that doctors discovered a burst ovarian cyst.<\/p>\n She was diagnosed with endometriosis and underwent an endometrial excision, but her pain persisted.<\/p>\n Ms Shepherd says she assumed her pain was normal. (ABC News: Briana Shepherd)<\/p>\n<\/p>\n
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