In Australia 1 in 9 girls, women and those who are gender diverse suffer from endometriosis at some point in their life.
There is no known cure for the disease that commonly affects the reproductive organs, it cannot be prevented and it can take an average of 6.5 years to be diagnosed.
The women’s health package in the 2022-23 federal budget put a spotlight on the disease, proposing improvements to the treatment, management and diagnosis of endometriosis over the next four years, with a $58 million commitment.
This would include establishing endometriosis and pelvic pain GP clinics, funding to cover the cost of MRIs under Medicare and the development of an Endometriosis Management Plan to support women with the disease.
Brisbane woman Aroha Liebhart has been struggling with endometriosis since she got her first period at 13, but it took 14 years, three laparoscopy surgical procedures and countless visits to gynaecologists and specialists before she finally received her diagnosis.
The financial barrier that comes with managing the disease is clear from her story.
Despite Medicare rebates and private health insurance covering a lot of the bills, she estimates she spent around $10,000 out of pocket last year on endometriosis expenses like infra-red saunas, physiotherapy, medications and GP visits.
This year she’s been keeping a diary of endo spending and has already forked out almost $3,000 from her own pocket, easily spending $400-$500 each month at the pharmacy alone – and we’re only in March.
Ms Liebhart said it’s “fantastic” to see the budget bring attention to endometriosis but there needs to be more information on how the funds will be distributed, whether it’s via a government controlled program or the advocacy groups that are already working hard for the community.
“I’m hoping that the government really looks at who they hand the funds to and how it’s utilised so that we’re making sure that it is benefiting the wider endometriosis community in the best way it can,” the 28-year-old said.
She said there needs to be strict guidelines on treatment as well as diagnosis moving forward, and further training is needed for gynaecologists to specialise in endometriosis.
“It really depends on what specialist you go to at the moment because obviously not every gynaecologist is going to be an endo specialist, and you’re seeing young girls out there being told to go forward with ablation (a procedure that destroys the lining of the uterus) which has since been shown to be detrimental towards treatment of endometriosis, while excision is the gold standard,” Ms Liebhart said.
People with endometriosis are currently relying on advocacy groups’ referral lists of where you can go to see the right kind of specialists.
“I remember the first time I accessed one of those lists, I think I called half a dozen different specialists on the list and they were all fully booked because there were so many people just trying to get into an endometriosis specialist,” she said. “So we obviously need more out there that are skilled to deal with the disease.”
What is endometriosis and what are the symptoms?
Endometriosis is a disease where tissue similar to the lining of the uterus is found in other parts of the body, such as the ovaries, peritoneum, fallopian tubes and the outside of the uterus, according to the Australian Institute of Health and Welfare.
It can cause pain and sometimes difficulties becoming pregnant, but it’s also possible to have the disease with neither of these problems, according to Endometriosis Australia.
The most common symptoms of endometriosis include:
• Pain that stops you on or around your period
• Pain on or around ovulation
• Pain during or after sex
• Pain with bowel movements
• Pain when you urinate
• Pain in your pelvic region, lower back or legs
• Having trouble holding when you have a full bladder or having to go frequently
• Heavy bleeding or irregular bleeding
How does health insurance support women suffering from endometriosis?
According to the Australian Institute of Health and Welfare, most (57 per cent) endometriosis related hospitalisations were partly or fully funded by private health insurance in 2019.
When checking that endometriosis is covered on a private hospital policy, look under ‘gynaecology’. It’s usually found on Bronze policies and higher (Silver and Gold), but some health insurers will also have cover for the investigation and treatment of the female reproductive system in a Basic hospital policy.
You can use private health to claim for treatments including laparoscopic surgery, physiotherapy, hysterectomy and specialist gynaecological care.
“I definitely recommend having private health insurance when you have chronic illnesses, especially at the moment with Covid where trying to get into surgery in the public system has such a long waitlist,” Ms Liebhart said.
“But even from my surgery in 2020 with Medicare and with private health, I was still out of pocket between $3,000-$5,000 for my laparoscopy.”
Regular pelvic Botox is a popular treatment to help ease endometriosis pain, but Ms Liebhart said without it on the Pharmaceutical Benefits Scheme (PBS) or covered by her health insurance, she’s been advised by her pain specialist that it would probably be an out of pocket cost of between $700-$1,000.
She said she’s happy having basic extras and hospital cover, and maximises the extras cover for sessions with her pelvic floor physiotherapist, as well as other recommended treatments like acupuncture and massage.
Private cover can also give you the benefit of being able to choose your own doctor and hospital, which can be particularly important for such specialised conditions such as endometriosis.
If infertility is an issue or one you are concerned about in the future, a Silver Plus or Gold level hospital policy might be worth considering which includes cover for birth and pregnancy as well as IVF.
How does Medicare help cover endometriosis?
Information from the Australian Institute of Health and Welfare shows 35 per cent of endometriosis related hospitalisations were partly or fully funded by Medicare.
Medicare can cover some of the cost of surgery like laparoscopy in a public hospital or a rebate if you’re referred to a specialist such as a physiotherapist as part of your treatment plan, but you’ll likely still find yourself out of pocket depending on the specialist fees.
The Medicare Benefits Schedule (MBS) states that Medicare will cover 75 per cent of the fee for laparoscopic surgery, but if you don’t have private health insurance you’ll have to pay the remaining 25 per cent out of pocket.
Ms Liebhart has managed to get an Enhanced Primary Care Plan (EPC) from her GP, which is a plan on the MBS for the treatment of chronic medical conditions such as endometriosis. She said it has helped tremendously to have this in combination with her private health insurance to help cover some of the big health expenses.
But a lot of the medication she needs for treatment is not government-funded on the PBS, meaning medicinal cannabis for pain management easily costs $1,000 out of pocket, and her script for the pill costs $85 every three months.
How is endometriosis diagnosed?
According to Endometriosis Australia, the only way to diagnose endometriosis is with the surgical procedure called laparoscopy, which is done under a general anaesthetic. In the procedure a camera is used to examine the pelvic organs for signs of the disease and a biopsy is taken.
Sometimes your doctor may suggest diagnosis without having a laparoscopy via methods such as ultrasound, colonoscopy or physical or visual examination.
According to Medibank claims data, there are no medical out-of-pocket costs for this in-hospital procedure 22 per cent of the time. The health fund says out-of-pocket costs typically don’t exceed $2,651.
How is endometriosis treated?
The three types of treatments for endometriosis are medications, surgical treatments via an operation or complementary treatments such as physiotherapy, psychology and medicines, according to Endometriosis Australia.
It’s recommended to discuss the different types of treatment with your doctor before starting one to properly consider the pros and cons and whether it would be suited to your personal health history.
Endometriosis Australia has a range of detailed information on its website about the disease and different options for sufferers to find support.