Endometriosis: Is there a breakthrough treatment coming for 176 million people?

Sascha: [00:00:02] Welcome to The Dive, the podcast that asks Who's the business news needs to be all business. I'm your host, Sascha Kelly. Here's some facts about endometriosis. According to the conditions official Australian website, more than 830,000 or basically one in seven Australian girls and women live with it at some point in their life. Symptoms are incredibly varied: fatigue, pain, bleeding and these symptoms can vary in severity as well, which means it takes the average Australian 6.5 years to be diagnosed. In an Australian Government report, Endo, as it's affectionately known by many, is reported to cost our society between 7.4 and $9.7 billion annually. Two thirds of these costs are attributed to a loss in productivity, and the remaining 2.5 billion are direct health care costs. Globally, statistics vary, of course, but there's something that is the same for generations. It's been regarded as a disease of the reproductive system and there is no cure. So symptoms are treated with medicine or surgery. That is until very recently when a series of breakthroughs signalled the cusp of change. To quote The Guardian, after generations of inaction and very few novel ideas, researchers and activists are hopeful a new path is being charted. It's Friday the 13th of October, and today I want to know are we about to have a breakthrough in endometriosis treatment? To talk about this today, I'm joined by my colleague and the co-founder of Equality Mates, it's Bryce Leske. Bryce, Endometriosis affects up to 10% of women between the ages of 15 and 44. I am certainly aware of it from an anecdotal position. You know, lots of friends talk about their experience with it, but can you give me the definition of what this is?

Bryce: [00:02:03] Sure thing, Sascha. So endometriosis is a disease in which tissue, similar to the lining of the uterus, grows outside the uterus and it can cause severe pain and fatigue, painful periods, painful sex and infertility.

Audio Clip: [00:02:17] Endometriosis often involves the pelvic tissue and can envelop the ovaries and fallopian tubes. It can affect nearby organs, including the bowel and bladder. So during a menstrual cycle or period, this tissue responds to hormones and due to its location, it frequently results in pain. 

Sascha: [00:02:36] And for years, the disease has been really poorly understood. I think that can almost be an understatement in many ways. Many women have struggled to be treated or diagnosed or just undertreated. 

Bryce: [00:02:50] Yes, and we can't sum it up better than The Guardian. Here's an excerpt. Often people with the condition report being written off as either hysterical type-A personalities too anxious about their health or even attention seekers. The average wait for diagnosis remains 7 to 10 years, and money for research has been seen worldwide, despite affecting the same number of women as diabetes. It's only receiving 5% of the funding in 2019. There is no known cause or cure, and all the while 176 million people with the disease suffer. 

Audio Clip: [00:03:26] All these women are in the uterus. It is just being labelled junkies because they've been told to take these pain meds so they don't have to come into hospital and clog up a bed.

Sascha: [00:03:36] Yeah, that 7 to 10 years waiting for diagnosis. That's the stat that really sticks with me. But this may now be what's slowly changing. In the space of just a few weeks around the world, we're seeing amazing breakthroughs in our understanding of the disease and possible treatments. So let's take a trip and start in the United Kingdom.

Bryce: [00:03:58] So yeah, in March 2023, the largest ever study on the genetics of endometriosis was published in Nature Genetics. The study by Oxford researchers found genetic links to 11 other pain conditions as well as other inflammatory conditions. It involved DNA from more than 760,000 women and found ovarian endometriosis is genetically distinct from other types and indicated there may be a genetic predisposition to excessive inflammation in people with the condition. 

Sascha: [00:04:28] Now, Bryce, let's come back to our side of the world where just weeks after this discovery we're talking about, we saw another breakthrough at Sydney's Royal Hospital for Women. 

Audio Clip: [00:04:38] Researchers are now able to grow endometriosis tissue from patients currently having surgery tested for different types of the disease and then test the different treatments against the specific types of endometriosis. 

Bryce: [00:04:53] Researchers grew tissue from different types of endometriosis and compared how each responded differently to treatment. Jason Abbott, a professor of obstetrics and gynaecology at the hospital, likens the development to those made in the treatment of breast cancer three decades ago. 

Sascha: [00:05:10] That's a pretty big statement. Yeah. All right. So we're heading north, going up to Japan now for what happened there. 

Bryce: [00:05:15] So, Sascha, just two weeks on from the Australian Discovery, Japanese researchers found a common form of bacteria may be contributing to the growth of an endometriosis via inflammation. The Nagoya University researchers looked at samples taken from hysterectomies in 28 women and they were stunned by the results.

Audio Clip: [00:05:34] But a new study of 155 women suggest the culprit might be fusion bacteria, a type of bacteria commonly found in the mouth GI tract and female genital tract to explore this link. Further research just took mice with endometriosis and infected them with fusobacterium and they found co-infection with this bacterium produced more intense and heavier endometriosis type lesions. They found that this bacterium was triggering an immune response around these endometriosis lesions. Importantly, those same lesions shrunk in size. When the mice were given antibiotics to combat fusobacterium.

Bryce: [00:06:03] Simply put, the researchers found a common form of bacterium that is found in gum disease and it is playing a role in the growth of endometriosis lesions and that it could potentially be treated with existing antibiotics. No hormones, no surgery.

Sascha: [00:06:18] Wow. So just three advances so close back to back. Put this together for us, Bryce. What do we know and how has this changed? Understanding and treatment. 

Bryce: [00:06:29] So endometriosis has been described as a disease of the reproductive system, which is why treatments up until now have been limited to hormones or surgical removal. But these treatments can work for some, but not all. Scientists now know endometriosis is in fact a whole body inflammatory condition that can alter a person's nervous system. 

Sascha: [00:06:50] Wow. So it's going to make a massive difference, I think, to, as you said, 176 million people out there who are suffering currently. 

Bryce: [00:06:59] Absolutely. 

Sascha: [00:07:00] Let's leave it there. I really hope we're revisiting this one in time to come. If you enjoy the dive, there is one thing you can do for us. It's to jump on your podcast player right now and write us a review. Five stars, please. That's what I love. But any of your words are really valued. They help us climb that mystery algorithm and get in front of the ears of new listeners. As always, I'm going to be back in your face on Monday with a new story. Until then.