In the latest episode of the Unprocessed podcast, IQS’s own Clara Mearns and Grace Martin speak with Endometriosis Australia’s Ellie Angel-Mobbs. The Aussie radio star shares her turbulent story and her top tips to empower women suffering with this debilitating disease.
You might know Ellie as the host of popular 2day Fm and Hit radio shows, but she’s also a passionate and dedicated ambassador for Endometriosis Australia, with a goal to raise awareness around the debilitating condition and to break down the stigma surrounding it. The radio host shared her long journey to diagnosis – one that is all too familiar for women around the world.
“My journey with endometriosis first began when I was 15 years old and it was day 2 of my very first period and my beautiful mum who also had gone through endometriosis – and so did her sisters – sat me down because she noticed I kept going to the medicine cupboard and getting Panadol.”
Ellie’s mother told her that the pain isn’t normal – it’s a sign of something amiss, and while the endometriosis ambassador initially dismissed the notion that she could have the condition, she eventually would get her diagnosis after years of pain.
“I had it in my head because the teachers in school taught me that periods are painful, I thought this is what I’m going to have to deal with for the rest of my life,” Ellie said. “It took about 12 years for me to be officially diagnosed for endometriosis.
“And that was via surgery, the laparoscopy, and they discovered that I had stage for endometriosis, so my body was a gold mine for endo as the surgeon said to me.”
What is endometriosis?
Endometriosis is an inflammatory reproductive disease affecting 1 in 9 Australian women and girls of menstrual age, with research finding around 10–15% around the globe may be living with the disease. Endometriosis significantly reduces a person’s quality of life, and unfortunately, it can take between 4 and 11 years to receive a diagnosis, with up to 6 in 10 cases left undiagnosed. The disease involves the growth of cells similar to those found in the uterus’ lining start to grow outside the uterus resulting in anything from abdominal pain, pelvic pain, back and leg pain to painful urination and bowel movements, heavy bleeding, infertility and bloating.
“So, the way that I like to simply talk about it is think of it like spider webs that are coming out of your womb that are latching onto various organs in your body, various parts and they can stick the organs together,” Ellie said. “It leads to debilitating pain, it causes the nausea, it causes the stabbing.
“I've heard people describe it like it's a grating feeling in their abdomen, all these weird and wonderful descriptions as to how endometriosis feels.”
And it’s not just limited to the uterus – Ellie reveals how endometrial cells can attack all manner of organs throughout the body.
“It attacked my uterus, it strangled my appendix”, Ellie told IQS, adding that it had also latched onto her bowel. “And then I've heard other stories of it attacking people's kidneys, it's been found in the heart, the lungs even up in the brain as well.”
It was after her diagnosis that Ellie reached out to Endometriosis Australia to form what is now a 10-year-strong partnership.
“I reached out to them and they said, look, I'm a radio announcer in Sydney, I'd love to be able to use my voice to be able to talk about my experience and become an ambassador for you,” she said. “That's when we got hitched.”
Breaking down myths
Ellie breaks down a number of dangerous myths around endometriosis on Unprocessed – from a misinformed doctor in decades past telling her mother the condition only affected nurses to the types and severity of pain involved, there’s a lot to unpack.
“There are 4 different stages, stage 4 is the worst it can get but even someone who has stage 1 may have the same pain as stage 4,” Ellie told IQS. “But even someone who's got stage one may have the same pain as someone with stage four.”
Ellie also delves into the world of silent endometriosis – many women suffer in silence, pun intended, with the condition and often struggle with misdiagnoses.
“So, this is where people won't even be aware of it and they'll go in and they'll think that they've got, IBS or some other gastro issue and sometimes doctors will go through and do the exploratory surgery and discover, hey, you've actually got endometriosis and this is what's been causing you the pain,” she said.
Ellie says one of the best ways to advocate for your health is to know when it’s time to get help.
“If the pain is causing you to stop your living your daily life to the fullest, then that is when there will be something wrong.”
Endometriosis and fertility
Like many women, Ellie found herself with fertility issues as a result of her endometriosis.
“1 in 3 will be affected by fertility issues when it comes to endometriosis,” she told IQS. “It attacked my uterus, and that also means I’ve got adenomyosis, the evil cousin of endo.”
At 27, Ellie was told, “your uterus is like a bruised apple, it’s going to be really hard for you to fall pregnant.”
The endometriosis ambassador was about to get married and hoping to have children, making this news all the more gutting.
“So, then I had to go down the, the, the joyous road of IVF and that's another can of worms because I didn't realise at the time, the IVF would actually then make my endometriosis worse and it was causing absolute hell for me,” Ellie said.
She would go on to experience kidney damage, halting her fertility journey to recuperate.
“Unfortunately, for me, this endo experience has left me unable to have kids.”
Advocating for yourself in the face of dismissive doctors
“It really is hard when you’re going through that initial stage, you need to be the CEO of your own body and fight until you get the answers you deserve,” Ellie told Unprocessed.
The endometriosis ambassador shared her relief to have a mother who had been through it all before and encouraged her to keep going, but she reveals just how disheartening the diagnosis and treatment process can be.
“I went to multiple GPs; I had one who wrote me a mental health plan saying I’m crazy and it’s all in my head, had another male doctor say to me just, take some Panadol and you'll be absolutely fine,” she said. “Another one said this is just normal and that's what women's business is.
“I found a fantastic GP who finally listened.”
Ellie finally was referred to an endometriosis excision specialist, Michael Cooper, and started to get the answers she needed.
“But still that initial going to doctors was such a long time because each time you go into a doctor's surgery and then they dismiss you, they tell you you're crazy, et cetera,” Ellie said. “Then you really walk away and you think, oh, maybe it is all in my head and you question everything and it, because to be able to build confidence back up to go and have another doctor's appointment, plus it costs money.”
It's why an organisation like Endometriosis Australia is so important in raising awareness and research to make headway in the diagnosis and treatment of this debilitating condition.
“We endeavour to increase recognition and awareness for endometriosis and we also provide education programs, funding for research as well,” Ellie said of the organisation. “So, we've got a huge team of people that will be constantly doing the research and getting funding from people who are generously donating to be able to do these research studies and getting patients because that's one thing too.”
Head on over to Endometriosis Australia for more information on the condition and how to support its research and treatment.
You can also read more about Ellie’s experience and role as an endometriosis ambassador HERE.
Catch the full episode of the podcast HERE – you won’t want to miss this one!