Fighting the scourge of endometriosis

An increased focus on this debilitating condition is welcomed, but the high costs of care remain

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It’s a disease that affects 10% of women and causes severe and frequent episodes of pain and infertility for some, but delayed recognition, poor knowledge and sheer bad advice are still making life harder for women with endometriosis. 

March is Endometriosis Awareness Month, a time when women should be feeling reassured that, at last, the impact of their illness is being recognised and steps are being taken to reduce barriers to care.

Instead many have been left panicking and angry after a report in newspapers last month that out-of-pocket costs for endometriosis surgery would increase by 20% if the MBS Review Taskforce committee’s recommendations are accepted.

National Association of Specialist Obstetricians and Gynaecologists president, Dr Stephen Lane, has told The Medical Republic that the committee’s proposed changes to the item numbers that cover the most common endometriosis surgery (35637 and 35638) will drive up costs and reduce access.

Currently item 35638 (with a $711 rebate) covers excision or ablation, the conservative but still complex surgery that Dr Lane says is appropriate for the majority of women with endometriosis.

It’s proposed to split that into sub-items with 35638X attracting a 10% lower rebate and 35638Y the same, and to move some endometriosis operations now covered by 35638 into 35637, which attracts a 40% lower rebate ($407).

To attract the same rebate for the same work, the surgeon under the proposed changes needs photographic as well as histological documentation and needs to excise, not ablate. But these are two things for which the equipment is often lacking in non-metropolitan hospitals, according to Dr Lane. He says rural and regional women with endometriosis will be worse off under the proposed changes.

“I have operated in regional hospitals where no photographic equipment is and never will be available, and there is limited excisional laparoscopic equipment available,” he says. “I can excise endometriosis in the city but may not be able to excise the same disease in the country, so I ablate the endometriosis.”

He says if a surgeon wants to charge the same fee as before to a patient who is privately insured, her refund will go down more than 40% from $1168 to $668.

A drop in fees would discourage surgeons from doing difficult surgeries in non-metropolitan areas where they cannot bill the patient above the scheduled fee, leaving women to find a privately billing surgeon to pay from their own pocket if they don’t want to wait years for surgery.

But Professor Jason Abbott, the chair of the taskforce’s Gynaecological Clinical Committee, has rejected these claims.

Professor Abbott, a gynaecological surgeon and medical director of Endometriosis Australia, says the complaints amount to “misinformation”, and that the committee’s changes will be cost-neutral and are designed to reduce the number of unnecessary surgeries.

There is “absolutely no recommended change to doctors’ reimbursement” in the relevant item numbers, he says, and the requirement for documentation will improve disease management.

Professor Jason Abbott
“This is about nothing other than providing women with correct information that has an impact on their health, and that’s going to be cost-saving in the long run.”

“There are recommendations requiring documentation of the severity of endometriosis at surgery, and this is about providing information to women on their current and potential future health status – women should welcome this change, and the requirement for documentation is completely appropriate,” he says.

“I think if you ask women with endometriosis, they all want to know what severity of disease they’ve got. Image capture and pathology is incredibly helpful since surgical treatment can aid in predicting fertility, with the presence or absence of disease helpful in understanding pain and recurrence, and that is the fundamental reason for those recommendations.”

Professor Abbott says a lack of equipment is no reason to settle for a suboptimal form of surgery.

“The increased requirements are for complex surgery, and if you’ve not got modern enough equipment to be doing complex laparoscopic surgery, you shouldn’t be doing it – no matter where you’re located.

“Image capture is available on all modern surgical laparoscopic equipment and the vast majority of endometriosis surgeons already take images to give to their patients.

“This is about nothing other than providing women with correct information that has an impact on their health, and that’s going to be cost-saving in the long run.”

Professor Abbott says the recommendations are designed to reduce the number of surgeries, especially in women who may not have endometriosis, for whom recurrent surgeries are not appropriate.

“These [proposals] have been very well thought through by a variety of people with extensive experience and understanding of the disease process.”

The recommendations have not yet been accepted by either Health Minister Greg Hunt or Labor’s health spokeswoman Catherine King.

Mr Hunt’s announcement in December of a National Action Plan for Endometriosis, following parliamentary lobbying by MPs Gai Brodtmann and Nicolle Flint, was a watershed moment for Australian women with the condition, which affects around 176 million women worldwide.

Lesley Freedman, co-founder of EndoActive with her daughter Sylvia, says the entire endometriosis community was delighted.

“We were so pleased – everyone had a huge burst of confidence that finally things were going to change,” she tells The Medical Republic.

“Many medical students never learn anything about it, many GPs don’t recognise the symptoms, that’s why diagnosis takes an average of seven years.

EndoActive co-founder
Lesley Freedman
“Millions and millions and millions have been put into breast cancer, and about $4 million for endometriosis.”

“We know of young women at 22 begging for hysterectomies because they think it’ll cure it or relieve their symptoms. For many women it doesn’t. We know of elderly women still suffering after menopause. Which is why we’re advocating for a lot more money to be put into research. Millions and millions and millions have been put into breast cancer, and about $4 million for endometriosis, by the NHMRC.”

She says the costs for the average patient go far beyond surgery and medical consultations.

“You can’t just go to any surgeon, you have to go to a really experienced one. There’s no guaranteeing what they’ll cost, and many girls don’t have private health insurance and may not even be able to work, so they’re trying to get in as public patients. Girls are waiting years to get a laparoscopy, which is years of agony.”

Sylvia says she has lost track of how much money she had paid out of pocket for surgeries, drugs and other treatments such as pelvic-floor physiotherapy, but that it must have been tens of thousands of dollars over the years.

“Because endo is a chronic illness, the costs are not just limited to surgery and hormone therapy,” she says.

EndoActive was founded to campaign for the introduction of dienogest (Visanne) in Australia, a drug that helps by shrinking endometriosis lesions and reducing pain, but costs up to $120 for a month’s supply and is not on the PBS. 

“The Minister for Health has said there won’t be any additional cost [following the MBS Review]. That’s what we hope,” Sylvia says. “I think it’s a good time to be highlighting just how much endo costs, not just individuals but Australia.”

The threat of higher costs has moved many women to express anger and despair on the EndoActive Facebook page. One comment says: “My doctor talked to me about the disability pension this week because my health has become so bad, but I wouldn’t be able to pay for my own healthcare if I stopped working.

“That’s the biggest hypocrisy: not only is my quality of life shit and I’m constantly in pain, my dreams are continually being taken away or gradually destroyed [because] I have to pay so much money for lacklustre treatment that consumes my life! I honestly don’t know where I would find the extra money for the proposed increase.”

Another says: “Tomorrow, I am having a $300 scan that Medicare does not rebate on (plus the Ubers to and from). In two weeks I go back to my specialist, there’s $120 (I get back $70, awesome). Then there is the surgery I am more than likely going to need – I’ll need to save around $6000 to have it, and last time I only got back $900. Then there are all the meds I take – pain meds, the pill, nerve pain meds […] Pelvic physio and a new pain specialist I am yet to book into as I can’t afford it. […] I support myself on my own wage in Sydney. And people wonder why I don’t go out… 1, my pain levels are DAILY and lead to my barely being able to walk most nights, but 2, I CAN’T AFFORD IT!”

Another: “Facing the financial, emotional, social, physical etc costs of endo, I sometimes wish it was terminal, never to feel the daily pain and losses that come with this disease.”

Professor Abbott says general awareness of endometriosis needs to improve, and the infrastructure to treat it should be brought in line with that for other common conditions such as diabetes and arthritis.

“The key points are recognition of pain at an early stage, and a discussion of the various aetiologies that might cause pain or infertility symptoms – endometriosis is the most common cause of pelvic pain and a leading cause of infertility.” About a third of patients will struggle to fall pregnant.

“GPs shouldn’t feel they’re alone in this situation. There are tools and resources they can refer to if they don’t feel they have the expertise. Endometriosis Australia, Jean Hailes – there’s lots of information.”

Professor Abbott says while the majority of women will be able to manage quite well with a plan of analgesics, hormonal suppression and self-care, that leaves a significant number with more intractable symptoms.

“What we see as specialists is often the very end-stage cases and unfortunately there are plenty of them – you can see on the support group websites that there are tens of thousands of women who are continuing to suffer despite pain plans, multiple surgeries and multiple interventions.

“But it’s not dissimilar to many diseases like diabetes, asthma, arthritis: recognise it early, put in a pathway, teach people how to look after themselves. We’ve not yet got there with endometriosis, and this is 10% of the female population. It comes down to investment, of course.”

He says some women are still getting bad advice. “There is some misinformation. [Some doctors] say get pregnant and it’ll all go away, but there is no evidence that pregnancy is going to be curative and of course pregnancy should never be used as a prescription – that is bad medicine, absolutely horrendous medicine. Telling 12-year-olds, 16-year-olds and 18-year-olds they need to start having babies – or alternatively that if they don’t have a baby now they may never – that’s absolutely absurd advice.

“Surgery has been the go-to for endometriosis but it shouldn’t be. And certainly if you are going to do surgery you do it once, you do it well. Scheduled surgeries should be absolutely verboten.”

Professor Abbott appeared on a panel of gynaecologists at the HealthEd Women and Children’s Health Update late last month in Sydney, discussing the treatment options over the life course of a woman with endometriosis.

The panel, chaired by sexual health physician Dr Terri Foran, also included Dr Jason Chow, a pain medicine physician and laparoscopic surgeon; Associate Professor John Eden, a reproductive endocrinologist; and fertility specialist Associate Professor Peter Illingworth.

Professor Abbott said while patients usually presented initially with dysmenorrhea, the youngest patient he had ever seen with endometriosis was only eight – drawing gasps from the audience.

All panellists agreed that the contraceptive pill was a good measure to suppress menstruation and also ovulation, which Associate Professor Eden said could cause pain in a sensitised pelvis.

Dr Chow said women with endometriosis had a high propensity for chronic pain in later life if their pain was not well managed, and that the disease could cause adverse psychological effects that were exacerbated by a lack of validation by doctors.

He said GPs were well placed to treat patients in a holistic way. “As specialists, we tend to say ‘can we do surgery on it or throw hormones at it?’” For young women, management needed to be broader than just medical – for example, working with schools to ensure the patient isn’t falling behind or seen as dropping out.

He said NSAIDs ibuprofen and diclofenac were the usual analgesics offered; codeine was largely ineffective; opioids could help short term, but regular use posed problems; and good evidence was lacking for cannabinoids.