Woman sheds light on life with severe pelvic pain as research gaps persist
Jaali Barton suffers chronic pelvic pain that has consumed her life. (ABC Midwest & Wheatbelt: Brianna Melville)
In short:
Twenty-four-year-old Jaali Barton says chronic pelvic pain has taken over her life despite her efforts to seek treatment.
Major gaps in research on pelvic pain have been blamed for a lack of effective help for patients.
What's next?
Ms Barton wants to spread awareness of the condition and show others they are not alone.
Jaali Barton was working her dream job running snorkelling tours at the Cocos (Keeling) Islands, when sudden debilitating pelvic pain left her curled up on the beach, unable to walk.
Bouts of pain had become more and more frequent for Ms Barton over the past decade, beginning at age 14.
"It is the worst pain you can imagine," she said.
"It feels like your insides are being carved out with a knife. It feels like everything is just exploding inside you."
Ms Barton was forced to come home to mainland Australia to seek treatment, but even that has proved difficult.
Shortfalls in funding and focus on the condition have left women like Ms Barton in prolonged pain, according to advocates.
Jaali Barton says her chronic pelvic pain forced her to leave her dream job as a tour guide on the Cocos (Keeling) Islands. (Supplied: Jaali Barton)
Untreatable pain
Two years on, the 24-year-old remains at home with her parents in the small coastal town of Kalbarri in Western Australia.
Her pain has only worsened.
Ms Barton loves days at the beach, travelling, doing yoga, working at her job as an education assistant and catching up with friends.
But her pelvic pain now flares almost every day and can last from hours to several days, trapping her inside her bedroom.
The walls are lined with beach photos and shells, but it remains a world apart from the life she misses.
"It's taken so much from me. All the things that I find joy in are now really difficult," Ms Barton explained.
Ms Barton's pain affects her pelvis and shoots down her legs, and is often coupled with head pain and fatigue.
Jaali Barton says it is hard to make plans when your body is unpredictable. (ABC Midwest & Wheatbelt: Brianna Melville)
She said it could not be eased by painkillers.
Ms Barton said her symptoms had caused her to frequently miss work, cancel plans with friends and give up travelling and exercise.
As a result, Ms Barton said it is extremely difficult to feel positive about her future.
"You just think, 'what's a life of being in pain every day,'" she said.
"It's living day by day, making no plans because your body is just unpredictable.
Jaali Barton says she feels alone in the fight with her own body. (ABC Midwest & Wheatbelt: Brianna Melville)
Long road to diagnosis
Ms Barton said that over the years that she has had symptoms, her mum would drive her the two hours to the Geraldton emergency department as often as twice a month.
However, once appendicitis was ruled out, she says doctors were left unsure about how to treat her.
“Most doctors, nurses, no one actually knows anything about it,” she said.
“You’re kind of left in the dark, on your own.”
After 10 years of seeking help, Ms Barton finally had a diagnostic surgery earlier this year, with a biopsy taken of an internal lesion.
The biopsy pointed to endosalpingiosis, but other doctors have speculated that she also has endometriosis.
Jaali Barton in hospital. (Supplied: Jaali Barton)
Both conditions involve reproductive organ tissue growing outside of where it belongs, often causing pain and inflammation.
She says she joined an eight-month wait-list for an appointment with a specialist to discuss the results of her surgery.
However, worsening pain now has her fearing that the lesions are spreading, and she persistently calls asking for her appointment to be moved forward.
She said enlisting the help of a naturopath and a pelvic physio has provided her some comfort this year, alongside a community of women she has connected with online.
“I get so many messages from young girls thinking they have the same thing, they have endo, they have the same symptoms," she said.
“If sharing this story is going to help anyone, then that’s going to help me.”
Research gaps remain
The founder and chair of the Pelvic Pain Foundation of Australia, Susan Evans, says while patients with pelvic pain often expect to be "fixed" by doctors, major shortfalls in research have limited what they can do.
Susan Evans is a gynaecologist, laparoscopic surgeon and pain physician who has authored a book about endometriosis and pelvic pain. (Supplied: Dr Susan Evans)
“There has been so little research in this space for generations," Dr Evans said.
“A lot of the data that we expect to be available just isn’t available.”
As a result, Dr Evans says “a lot of catch-up” is required in research to fully understand the prevalence of pelvic pain and investigate its causes, which will require serious funding.
However, she says it is important for people with pelvic pain to learn about it themselves and build a team of health professionals to address their specific needs.