Endometriosis: The Crippling Condition One In 10 Aussie Women Battle Every Single Day
Debilitating. Heartbreaking. Embarrassing. These are just some of the words that five women living with endometriosis used to describe the condition when speaking to 10 daily.
One in ten -- or about 740,000 -- Australian women live with endometriosis, an often crippling condition where tissue similar to the lining of the uterus grows outside the uterus in the pelvis.
Over time, scar tissue -- called adhesions -- grows between structures such as the ovaries, vagina and rectum, essentially sticking them together like glue.
There is currently no cure. Treatment options include drugs or surgery to remove the adhesions -- which often end up growing back.
The condition can also cause incredible, unbearable and near-constant pain.
After years of excruciating stomach pain, Network 10 marketing manager Emma Kasbarian, 25, was finally diagnosed with endometriosis a decade ago.
"The best way I can describe the pain is that it feels like someone is wringing my stomach the same way they would a wet towel," she said.
For 2Day FM announcer and Endometriosis Australia ambassador Ellie Angel-Mobbs, it's a "constant stabbing." Fellow ambassador and nursing student Ainsley Zammit, 21, told 10 daily that endo causes her to vomit, faint and even have seizures.
Media personality and Endometriosis Australia ambassador Mel Greig remembers feeling like a "drama queen" when she suffered a severe 'flare-up' that left her curled in the foetal position while on a date with an ex.
On top of that, women living with endo can also experience near-daily headaches, digestive issues, bloating, severe fatigue and more which affects their work, social life and most importantly their ability to function.
But that's not all.
According to Dr Geoffrey Reid, endometriosis specialist and member of the Endometriosis Medical Advisory Committee, there is "no question" that endometriosis can affect fertility.
Half of the women with endometriosis will experience difficulties with becoming pregnant and it's the primary reason behind 10 per cent of all IVF cases, he said.
Specifically, endo impacts upon egg quality, sperm transport in the genital tract, fertilisation and probably -- and most importantly -- embryo implantation.
There's also evolving evidence that it's associated with a higher than average miscarriage rate, Dr Reid told 10 daily.
Although it's avoided as much as possible, a hysterectomy may be performed if a woman's adhesions have badly infiltrated her uterus or fallopian tubes, effectively ending her chances of carrying a child.
As such, many women with endo are encouraged to have children as soon as possible after their diagnosis -- but when you're diagnosed at 16 years old as Ainsley was, what does that mean?
"[Having kids] wasn't really something that was on my mind!" she said.
Ellie, whose uterus has been severely damaged by endo, had just begun a new relationship with her now-husband when she was told to "hurry up and get knocked up".
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Emma told 10 daily that she has "a lot of fears and concerns around having children" and plans to freeze her eggs if it appears that her ovaries may be affected.
Mel Greig has spoken publically about freezing her eggs with her now ex-husband but was unable to use them without his permission. Ultimately she was forced to see them destroyed earlier year as part of their divorce.
She now intends to freeze more and potentially look for a sperm donor as she's "not dating right now."
In a cruel twist, the 37-year-old has to deal with the severe abdominal bloating associated with endo flare-ups which make her appear pregnant.
"It's really, really hard," she told 10 daily through tears.
Without a cure, there is a strong emphasis on education and early intervention.
Dr Reid said that it takes on average about eight years to be diagnosed with endo. All five women 10 daily spoke with recounted how they'd been dismissed by medical professionals for years before finally getting answers.
Ellie was told by many that her symptoms might be "all in her head" and that maybe she was a "little bit crazy."
Hoda Kobeissi, a former MasterChef contestant and Endometriosis Australia ambassador, also had to deal with her mother's initial embarrassment and denial of her condition.
"[Mum] just didn't know about endometriosis ... but the more she saw what I was going through, all the surgeries, the more she understood and supported me," she explained.
In November 2018, South Australia became the first state to launch a school education program to raise awareness on periods, pain and endo.
It's already seeing success, with reports that a lot of girls had their painful periods investigated after the program and were subsequently diagnosed with endo.
The key message is that severe period pain and bleeding is not normal.
"It doesn't hurt to get it checked out," Hoda told 10 daily.
According to Dr Reid, the future holds some "exciting potential new approaches" such as genetic therapies that could treat or reduce susceptibility to the condition, as well as non-hormonal immunotherapeutic drugs.
But more needs to be done, in Mel's opinion.
"We need more funding. Yes, the National Action Plan was a positive step forward [but] there are research projects out there that can be funded -- we simply need more money," she told 10 daily.
For the time being, Mel, Hoda, Ellie, Ainsley and Emma -- and so many others -- are left with little choice but to take each day as it comes.
March is Endometriosis Awareness Month -- for more information or to join one of the national high tea events on Saturday March 30, visit the website.