A young woman from Western Australia is facing debilitating pelvic pain that has drastically altered her life. Jaali Barton, 24, was living her dream of running snorkeling tours at the Cocos (Keeling) Islands when she was struck by severe pain that left her unable to walk.

Barton has experienced increasing bouts of pain since she was 14 years old. "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."

After enduring years of discomfort, Barton returned to her hometown of Kalbarri to seek treatment. However, she has found it challenging to get the help she needs. Advocates say that a lack of funding and focus on pelvic pain has left many women, including Barton, suffering for extended periods.

Now living with her parents, Barton’s condition has worsened. She enjoys activities like going to the beach, traveling, and yoga, but her pelvic pain flares almost daily, often confining her to her bedroom for hours or even days. "It's taken so much from me. All the things that I find joy in are now really difficult," she explained.

The pain radiates from her pelvis down her legs and is often accompanied by headaches and fatigue. Painkillers have not provided relief, and Barton has frequently missed work and canceled plans with friends. This has made it hard for her to maintain a positive outlook. "You just think, 'what's a life of being in pain every day?'" she said.

Barton has spent years seeking answers. Her mother would drive her two hours to the Geraldton emergency department, sometimes as often as twice a month. After ruling out appendicitis, doctors were uncertain about how to proceed. "Most doctors, nurses, no one actually knows anything about it," she said. "You’re kind of left in the dark, on your own."

Earlier this year, Barton finally underwent diagnostic surgery, which revealed an internal lesion. A biopsy indicated endosalpingiosis, while some doctors suspect she may also have endometriosis. Both conditions involve reproductive tissue growing outside its normal location, leading to pain and inflammation.

Barton is currently on an eight-month waitlist to see a specialist about her diagnosis. As her pain intensifies, she is anxious that the lesions may be spreading and has been persistently trying to expedite her appointment.

In the meantime, she has sought help from a naturopath and a pelvic physiotherapist, which has provided some comfort. She has also connected with a community of women online who share similar experiences. "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."

Susan Evans, founder and chair of the Pelvic Pain Foundation of Australia, highlights the significant research gaps in understanding pelvic pain. "There has been so little research in this space for generations," Dr. Evans said. She noted that much of the data expected to be available is lacking, which has hindered treatment options.

Dr. Evans emphasized the need for increased funding to better understand the prevalence and causes of pelvic pain. She also encourages individuals suffering from pelvic pain to educate themselves and build a supportive team of health professionals to address their specific needs.