Canberra woman Drina Veljaca feels pushed out of the system and unacknowledged after being diagnosed with endometriosis last August.
The 36-year-old has since juggled intense pain and lack of care options alongside caring for two teenagers after her specialist cancelled a post-surgery appointment.
The specialist cancelled despite waiting weeks to see her and suggested Ms Veljaca seek another specialist opinion.
"I am sorry but I have nothing left within the scope of my practice to offer you," the cancellation letter said.
But Ms Veljaca spent almost 12 months trying to find a new doctor to take up management of her endometriosis.
She said she's been turned away by several specialists, who were either only focused on diagnosis or required private health insurance.
Instead, they suggested she try her original specialist. "I was in a position where I can't be referred to her because she said she can't see me," Ms Veljaca said. "It makes me feel completely disregarded."
The federal government has pledged funding for complex gynaecological conditions, which includes endometriosis, by increasing medicare rebates for longer specialist consultations from July 2025.
But accessibility, affordability and after-care remain major concerns for people with endometriosis in the ACT who feel these issues are not addressed adequately by the changes.
Endometriosis is a gynaecological disease where endometrium tissue grows outside of the uterus. One in nine Australian women are affected and it is more common than diabetes.
In Ms Veljaca's case, it impacted her kidneys. For others it grew into their spines, on their bladders or caused severe gastrointestinal problems.
Symptoms vary from person to person but usually include pelvic pain, heavy and painful periods, fatigue and pain during sex.
Ms Veljaca's symptoms started around the age of 15.
"The pain is a pain that can't be managed with panadol, nurofen or even endone," she said.
"Then I end up in the hospital and they're giving me fentanyl and morphine which actually relieves it for a short period of time.
"And then it comes back again."
Ms Veljaca used acupuncture until it became too expensive. She was concerned about how much sick leave she had taken.
With what she describes as an average job on an average wage, she's unable to afford alternative medicine in lieu of a specialist.
"The one thing that falls off out of my budget is my health," she said. "I can't even afford for my own treatments."
The federal government's latest funding increase won't help her afford a specialist when there are none to see her, and the wait times for public services can be several years.
She has attended the emergency department twice this year for severe pain with no alternatives available to her.
QENDO is a not-for-profit organisation committed to supporting anyone affected by endometriosis, adenomyosis, PCOS or pelvic pain and runs a support group on facebook.
Members of the group have reiterated similar issues around accessibility and affordability of care.
One member, who wished to remain anonymous, recounted having a radical hysterectomy to escape the "absolute disaster which is gynaecological care" after 30 years of symptoms.
With an ACT election in October, members are calling for better education of general practitioners on pelvic pain and ongoing care for endometriosis, and funding specifically for public services like the Endometriosis Centre to decrease wait times.
An ACT government spokesman said a national shortage of specialists had created challenges with wait times: "Canberra Health Services is exploring sustainable service models to realign resourcing within Gynaecology Outpatient Services more broadly. This will ensure those with the highest need are seen as a priority and will maintain reliability of services for patients."
Canberra Health Services was reviewing some allied health service offerings to provide more support for patients with gynaecological conditions, the spokesman said.
Timely holistic care such as access to endometriosis nurses, pelvic physiotherapists, pain specialists and pain psychologists were particularly important to treatment, QENDO Canberra volunteer Natalie Dunn said.
Finding adequate care was a big hurdle, she said.
"Unfortunately at the moment the ACT public system is not adequate, with long wait lists. We are often telling people to go to Sydney because they will wait less and pay less. But for working people with families this can be a big ask," she said.
She said they ended up seeing gynaecologists who didn't specialise in treating endometriosis.
Australia National University School of Medicine and Psychology PhD candidate Dr Susanne Ilschner reiterated the need for specialists to work together and for the continuity of care after diagnosis.
In a biographical study on endometriosis, she said many participants were left disappointed post-diagnosis when nothing changed.
"There's a first relief or some feeling of, 'Oh now I can control what's going on' and then huge disappointment," Dr Ilschner said.
She said pharmacists were particularly important in managing multiple medications, while dietitians, physiotherapists and alternative therapies should be part of holistic treatment.
A Department of Health and Aged Care spokeswoman said they were committed to supporting access to high quality and affordable healthcare. While the July 2025 changes would allow for longer consultations with larger rebates, the government couldn't set fees charged by doctors or require them to charge only bulk billing services.
"Medical practitioners are free to set their own value on their services, and the actual fee charged is a matter for doctor and patient," the spokeswoman said.
