‘I am hopeful’: Endometriosis treatment news Aussie women need to hear

The pill has been the leading treatment option for endometriosis for almost 70 years. Groundbreaking new research could now provide a long-awaited alternative.

It’s been the leading treatment option for endometriosis sufferers for almost 70 years, and a controversial one too. But groundbreaking new research could provide a long-awaited alternative to the pill.

“For many years, there has been a bit of a disconnect between women and their medical providers around their pain,” Dr Fiona Cousins, a postdoctoral research scientist with Victoria’s Hudson Institute’s Endometriosis Stem Cells Group, tells news.com.au.

“I think there’s also probably been a lack of awareness of certain women’s health disorders.”

With no other condition is this more apparent than endometriosis – a disease in which tissue similar to the lining of the uterus grows outside it, usually in areas like the ovaries and fallopian tubes as well as on organs such as the bladder, bowel, vagina, and cervix, causing severe pelvic pain and fertility issues.

Diagnosis of the chronic illness, which affects one in nine Australian women, takes an average of seven years because of its difficulty to pinpoint and treat. There is no known cause or cure.

Thanks to the efforts of scientists like Dr Cousins, however, all of that could be about to change.

Medicare is failing women and it’s About Bloody Time things changed. Around one million suffer from endometriosis. There is no cure. Help is hard to come by and in rural or regional areas, it’s virtually impossible. We are campaigning for longer, Medicare-funded consultations for endometriosis diagnosis and treatment. Read more about the campaign and sign the petition here

The first-line treatment for endometriosis has been the same since 1957: hormonal contraceptives.

“A lot of patients go on the pill because it essentially puts their lesions into a dormant state and so, while you’re on the pill, they hopefully don’t grow anymore,” Dr Cousins explains.

“It also stops any further retrograde menstruation into the peritoneal cavity, which we think is one of the main causes of endo.”

Once the patient decides to stop taking the pill, however, the symptoms it can help to alleviate – most notably, pain and excessive bleeding – almost always come roaring back.

“Those treatment options also don’t actually treat the lesions – they don’t get rid of the lesions,” Dr Cousins said.

The “gold standard” of endometriosis treatment, therefore, has long been laparoscopic surgery – a keyhole procedure that is the only way to diagnose and physically remove the disease’s lesions, scarring and cysts.

The oral contraceptive pill has been the first-line treatment for endometriosis since 1957.

Given the “very invasive” nature of the procedure, however, Dr Cousins says that scientists “probably need to … work on or do more to try and find a definitive non-invasive diagnostic”. This is but one focus of the team she is part of at the Hudson Institute, led by Professor Caroline Gargett.

UNSW PhD Candidate, Kate Gunther, agrees. A laparoscopy is “not accessible to everyone, and not everyone can afford it”, she tells news.com.au.

“You can (also) have the best surgeon in the world, who goes in and cuts out all visible disease, but the average rate of recurrence is about 50 per cent, and that’s at five years (post surgery),” Ms Gunther, a member of the UNSW Gynaecological Cancer Research Group, says.

“So, flip a coin as to whether this is something that comes back for you. If this is a surgery that you have to have every five years, in theory, for the remainder of your reproductive lifespan … that is a massive undertaking. Not just financially, but the recovery time, specialist appointments, time away from work. It is a stress, an emotional toll.”

At the Hudson Institute, Dr Cousins is working on a solution beyond the “very limited” current options that can both attack and stop endometriosis lesions from growing.

What she’s looking at is “a novel type 1 interferon called Interferon Epsilon” – a potential treatment for ovarian cancer that Dr Cousins wants to see “if we can harness for endometriosis”, given the similar nature of the two diseases.

“It has the possibility to reprogram a patient’s immune system to detect the lesions and attack them, but also to directly act on the lesions themselves and stop them growing,” she says.

“The work I’m doing at the moment (is) with in vitro and in vivo preclinical models, and that seems to be encouraging so far. That’s good.”

The biggest barrier scientists face in this field, Dr Cousins says, is “always” money.

“It used to be that women’s health was really poorly funded. Now, it’s not the fact we don’t get funding, it’s because there’s so little money available for everyone,” she says.

“Before, you could say that people had just never heard of endo, so (governments) didn’t see why they should have to fund it. But I think now, when I talk about what I do … it’s a lot more well known.”

Worldwide, government investment in endometriosis research has been consistently lacklustre. In Australia, it received five per cent of the funding diabetes did in 2018, despite affecting the same number of women. Researchers are therefore forced to look further afield to “a lot of philanthropic sources or foundations who want to support women’s health” in order to continue their work, Dr Cousins says.

“Unfortunately, the federal budget for funding hasn’t increased. So, science gets more expensive, and more grants go in because people are desperate to get the funding,” she says.

“We’re competing with more people for what is essentially less money.”

As a result, developing and getting a treatment on the market can take upward of a decade.

On February 23, a new drug called Ryeqo was approved for use in Australia, aimed at relieving the excruciating pain many with the condition suffer. The tablet, intended to be taken once-daily, costs $135 for a month’s supply, and is yet to be subsidised by the Pharmaceutical Benefits Scheme. It is the first medication addressing endometriosis to be approved by the Therapeutic Goods Administration (TGA) in 13 years.

“A lot of these (treatments) get to phase 1 and then unfortunately don’t go any further,” Dr Cousins says, explaining the delay.

“As soon as you have one adverse effect (in a patient), it can sink a whole trial.”

Dr Fiona Cousins, a postdoctoral research scientist at with Victoria’s Hudson Institute’s Endometriosis Stem Cells Group. Picture: Supplied

It is also difficult to gauge, Ms Gunther says, what a “good” outcome for someone with endometriosis might be.

“Is it a reduction of pain? What would you think is a valid number if you were to rate your pain on a scale of 1 to 10? If it goes down two points over a month (with treatment), is that clinically significant? It’s really hard to measure,” she says.

“And what one person says, ‘Yeah, that’s worth it’, another person might say, ‘No, it’s not’.”

That endometriosis is a chronic condition, she adds, means “a patient might need to be on a (specific) treatment every day, every other day, for 30 years”.

Dr Cousins and her team hope that because Epsilon is “a more naturally-produced interferon, and seems to be more female reproductive tract-specific, it’s going to be much better tolerated in women”, she says.

If Epsilon “doesn’t get taken up”, Dr Cousins is still optimistic we are on the verge of a breakthrough in treating endometriosis. The “massive swell” in awareness of the condition over the last seven to eight years, she says, is proof of that.

“It’s not just about the funding. Even people wanting to listen is a big thing, and not being dismissive (saying), ‘Oh, you just work on this women’s health disorder’,” Dr Cousins says.

“And that has come from greater awareness. So, I am hopeful. I really am. I think the research is going in the right way.

“There are loads of people around the world working on endo. So even if (it’s not) our treatment … someone else will come up with something. I’m absolutely sure of that.”

About Bloody Time is an editorial campaign by news.com.au that been developed in collaboration with scientists recommended by the Australian Science Media Centre, and with the support of a grant from the Walkley Foundation’s META Public Interest Journalism fund.