Endometriosis: Bindi Irwin’s heartbreaking battle with disease laid bare amid hope for a cure

It is the debilitating and life-shattering disease that affects one in nine women and girls, ruining their dream of starting a family but are scientists on the verge of finding a cure? In Western Australia alone more than 85,000 people suffer from endometriosis but there are fresh hopes for a breakthrough with new trials for long-term relief and easier diagnostic tools in the pipeline. Endometriosis occurs when tissue similar to the lining of the uterus grows in other parts of the body where it does not belong. The disorder can cause a range of issues including chronic pelvic pain, bowel dysfunction, fatigue, heavy periods, and fertility issues. It has been in the spotlight again this month with wildlife warrior Bindi Irwin opening up about her laparoscopy — where a tiny camera is inserted into the abdomen — to diagnose her decade-long struggle. The 24-year-old mother said the health battle had her feeling “very lonely”. One drug, dichloroacetate, will soon be trialled in Edinburgh and London to see whether it will relieve pain while an antibody called AMY109 is being tested in Japan to assess whether it can reduce inflammation and even reverse endometriosis. Closer to home, the University of Western Australia and doctors at King Edward Memorial Hospital are building up a biobank of endometriosis samples to investigate what contributes to the condition and how to better treat it. And an easier option to diagnose patients is being worked on in Perth with an invasive surgical procedure the only way to definitively diagnose the chronic condition. Despite it thought of as a modern condition there are descriptions of women with endometriosis symptoms dating back 2500 years ago. The disease was said to be first identified by Karl von Rokitansky in 1860 but the term was first used by gynaecologist John Sampson in 1921. However, it wasn’t efficiently diagnosed until the 1980s when laparoscopic biopsies — which remain the gold standard for diagnosing the disease — were introduced. The symptoms of endometriosis vary for every person but many with the disorder are faced with issues that make it harder to fall pregnant, including scarred fallopian tubes and impaired implantation. A study by Meuleman et al, suggested that 47 per cent of infertile women may have the condition. Until very recently, endometriosis has continued to be almost invisible to the public, often referred to as the “missed disease” despite its economic and social burden being high. Research by EndoActive and EY found endometriosis costs the Australian economy a mammoth $7.4 billion a year in lost productivity. The condition has mainly come into the spotlight due to celebrities and advocates speaking out about their experience with endometriosis. Emmy-nominated actress Padma Lakshmi is recognised as being the first celebrity to raise awareness of the condition after starting Endometriosis Foundation of America in 2009. Recently, the daughter of Crocodile Hunter Steve Irwin revealed her endometriosis had left her tormented by fatigue and pain, and presented a challenge to having a second child after having her daughter Grace two years ago. Ms Irwin revealed doctors found 37 lesions and a cyst during her surgery. She said her doctor’s first words to her while she was in recovery were: “How did you live with this much pain?” In a video posted online she said she previously felt defeated when she couldn’t find an answer. “I know with endometriosis; the sad thing is that it often doesn’t show up on any scans. I got every scan under the sun, and nothing showed up. It wasn’t until I had that exploratory surgery that they knew what was happening,” she said. “So you have to stay strong and surround yourself with people who love you and will be there for you no matter what because it’s scary when you don’t have answers. “You can feel very lonely. You can feel very isolated, but you have to hold on and keep searching for answers no matter what. It is imperative.” Irwin is among a number of high-profile sufferers whose brave admissions have helped shine a focus on the ailment. Child entertainer Emma Watkins experienced abdominal pain since girlhood but did not realise — as many endometriosis sufferers do not — that this was not part of a normal menstrual cycle. “Even though the media had started to try to shed some awareness on the subject, even when I was diagnosed I still didn’t believe it,” she said in 2018. “I thought it would just go away because I ignored it for so long; I didn’t realise it (advancement of the condition) was happening.” In 2021, model Chrissy Teigen also underwent surgery to alleviate the symptoms of her endometriosis saying the pain after the procedure was still better than the pain of the disease. “My whole belly is numb. It’ll be numb for a couple of days. That makes it hard to even, like, cough . . . but it is truly still better than the contractions and the pain of endo,” she said. “Usually I’m really good after (surgery). This one’s a toughie.” Star Wars star Daisy Ridley, 31, who was diagnosed with endometriosis at the age of 15, said Darth Vader would squirm at the thought of battling endometriosis. The condition flared up again while she was promoting The Last Jedi in 2017. “Eight years down the line, pain was back (more mild this time!) and my skin was THE WORST,” she posted on social media. She went public with her health issues to help others dealing with undiagnosed conditions. “To any of you who are suffering with anything, go to a doctor; pay for a specialist; get your hormones tested, get allergy testing; keep on top of how your body is feeling and don’t worry about sounding like a hypochondriac,” she wrote. Grammy-winning recording artist Cyndi Lauper suffered from endometriosis in her 30s and she struggled with infertility as a result. After visiting a fertility doctor she eventually had a son at the age of 44. “I would do an album and go to hospital, then do another album and go to hospital,” she said. These celebrities are among the millions of people who had to wait years before their pain was recognised with most waiting an average of seven years before diagnosis. Specialist gynaecologist and advanced laparoscopic surgeon Sean Copson said the reason for delays was multi-factorial. “For a long time women have been told painful periods or pelvic pain are a normal part of being a woman so there needs to be more awareness that it’s not normal,” he said. “The other reason for delays are related to accessing appropriate care, which is improving recently.” Two clinics are about to open in WA to treat endometriosis sufferers as part of a broader national trial working out the best way to deal with the chronic condition. Pioneer Health Albany and the Garden Family Medical Clinic in Murdoch have been chosen to house the new clinics due to their expertise in women’s health and proximity to where most sufferers live. The clinics are among 20 operating in existing GP facilities in metropolitan and regional areas across the country to treat people living with the disorder with the aim being for earlier diagnosis and treatment. Garden Family Medical Clinic director Andrew Leech said he had not even advertised yet but there were already 160 women that had registered for the clinic. “There is currently a long backlog of patients with specialists telling me it’s a one to two-year wait in WA,” he said. “Gaps in diagnosis can be up to eight years also, which puts patients at risk of other health and mental health issues. “This clinic has the goal of improving accessibility and outcomes in terms of diagnosis, pain management and holistic care.” Proteomics International Laboratories in Perth is also working to fix delays in diagnosis by developing a new early-screening method, which could help rule out the need for invasive surgery. The company is developing a blood test to identify up to 90 per cent of patients with endometriosis, after a study of more than 900 participants. Proteomics has identified a panel of 14 biomarkers that change concentration as the severity of endometriosis increases and has built a series of statistical models using different combinations of these biomarkers to diagnose disease. The biomarkers identified show a link to the unwanted tissue growth that occurs in endometriosis. “The current data that’s coming out suggests it’s reasonably accurate but what they have at the moment is not yet at an accuracy that’s going to guide clinical management,” Dr Copson said. “This is still very much in the research phase but it’s a very exciting space to watch.” Despite endometriosis becoming more recognised in the medical field there is still an unmet need for new medical treatments with current resolutions including hormonal contraceptives, surgery, conventional pain relief, and non-pharmaceutical methods such as physiotherapy and mindfulness. However, contraceptive treatments aren’t suitable for everyone, especially those trying to conceive. Surgery is also not an effective long-term cure with about half of those who have the procedure experiencing a return of symptoms within five years. For Perth theatre nurse Leah Bell, no treatment even touches the surface of her daily pain. Ms Bell has been in and out of hospital since the age of 14 and was misdiagnosed with irritable bowel syndrome until an ultrasound revealed she had stage four endometriosis. The scan lit up with lesions even on her bowel. “They were quite shocked because usually you can only see them laparoscopically,” she said. “Since then my life has changed and I feel like my pain is increasing everyday, which sucks.” She said the pain gets so bad sometimes it feels like her ovaries could explode. “I work as a theatre nurse and even this week I had to go home early during a surgery because I couldn’t stand any longer,” she said. “It really does impact me everyday, which is hard, especially as a nurse when you have to help other people and you’re in pain yourself.” Ms Bell was considering surgery to relieve the symptoms but this was ruled out due to possible complications to her bowel. “Ultimately surgery is palliative. It’s not going to change or cure my disease, it will always be there,” she said. “I take the hormone pill but it doesn’t stop my disease from growing so there’s not really any treatment for me. “It makes me angry — at work we can diagnose prostate issues with a blood test and yet there’s nothing for endometriosis, which affects so many.” She said she is hopeful a cure will come out of the research happening across the world. “A cure would be life-changing; I can be normal,” she said. If the trial is successful, dichloroacetate could be the first new class of drug for endometriosis in 40 years and would the first non-hormonal, non-surgical treatment. The trial will involve more than 100 women in Edinburgh and London to see whether the drug will relieve pain. Half will take the drug for 12 weeks and the other half will have a placebo. The participants will give blood samples and complete questionnaires over two-and-a-half years to see whether the drug is effective. The study comes after earlier research, which showed that cells from the pelvic wall of women with endometriosis produce higher amounts of lactate — a potentially harmful waste product that is usually made by muscles and red blood cells when the body is running low on oxygen during exercise. Lab-based experiments suggested the lactate fuelled the development and growth of endometrial tissue. When cells were treated with dichloroacetate, lactate production decreased to normal levels and the size of the endometriosis lesions was reduced. An antibody called AMY109 is also being trialled in Japan and has already proven to reduce inflammation and partly reverse endometriosis in monkeys. In a six-month trial by Chugai Pharmaceutical, 17 monkeys with surgically-induced endometriosis were given injections of the antibody on a monthly basis with the scar tissue almost halving over that time. It partly reversed the endometriosis without disrupting the menstrual cycle or causing weight gain, according to the journal of Science Translational Medicine. A trial is now set to run in human participants with endometriosis. Dr Copson said a cure would be a game changer for not only those suffering from the debilitating disorder but also ease the financial burden of the disease. “When I see someone that has a diagnosis of what’s basically an incurable disease it’s a huge thing for someone to be faced with,” Dr Copson said. “It’s a hugely common disease and it has such a detrimental effect on people’s lives. Research is pertinent to try to find a cure as well as ways to improve the diagnosis and management. “It’s incredibly exciting and brilliant, the research taking place — it highlights there’s a huge need for more investment into research for endometriosis.”