Endometriosis advocates join news.com.au’s About Bloody Time campaign
Three high-profile Australian influencers have shared the “horrendous” symptoms of a painful medical condition that affects women.
An Australian fashion designer who was made to “feel crazy” for a decade before she was finally diagnosed with endometriosis is among a group of advocates who have joined news.com.au’s About Bloody Time campaign.
Thessy Batsinilas, the founder and co-creator of Sabo Skirt, is one of several high-profile women backing our call for longer, Medicare-funded consultations for diagnosis and treatment so women can access affordable endometriosis care, no matter where in Australia they live.
Around one million Aussies are suffering from endometriosis, a chronic condition that causes pain and infertility. There is no cure.
The current Medicare system pays a very low rebate for gynaecological care, leaving women with two options: short consults that barely scratch the surface of their issues, or huge out of pocket expenses. For many, it’s both.
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.
This demand for medical aid is also supported by entrepreneur Keira Rumble and former MAFS star Elizabeth Vega-Sobinoff, who both live with the chronic condition.
Their stories are all different, but each of these women share the same experience regarding their pain being misunderstood, leading to complex and varying paths for each diagnosis.
‘I was made to feel crazy for 10 years’
Thessy began experiencing endometriosis symptoms from her very first period at age 14, but didn’t get a diagnosis until she was 24.
“It’s crazy to think I endured 10 years of thinking this pain was all in my head,” the fashion designer told news.com.au.
“Don’t get me wrong, I often raised the question and pleaded for answers, but the response was always the same; ‘you’re experiencing normal period pain’.
“But it’s not normal to look perfectly fine one day and seven months pregnant the next.”
The now 34-year-old, who has amassed 160,000 followers documenting life as she built her popular brand, has undergone five laparoscopy’s to remove the tissue and said the disease has “even claimed most of my reproductive organs”.
A laparoscopy is a keyhole surgical procedure used to diagnose and treat endometriosis by checking for abnormal deposits of endometrial tissue (endometrioma), scarring or cysts in the reproductive organs and pelvis, and if necessary, removing this tissue.
“During one of my surgeries, my surgeon found that both of my fallopian tubes were both completely deformed, blocked and ruined due to endo,” she explained.
“He removed both tubes and one ovary, which had a 14cm endometrioma on it. This left me with half of 1 ovary as I’d already had surgery removing a 9cm endometriomas from that prior.
“Having these vital organs removed meant that I could not fall pregnant naturally and I would in fact only be able to conceive a child through IVF.”
In total, Thessy – who is now mum to daughter Zani, 5, and son Jay, 3 – completed four rounds of IVF, comprising of more than 10 embryo transfers and years of treatments.
She’s also gained an understanding of how external factors such as diet and exercise can help manage her constant symptoms.
“I will always have endo, but I have managed to find a way to live with it,” she said.
“During my teenage years I would be bedridden for three days minimum when I got my period. Nowadays I don’t even take Panadol.
“There are, of course, periods when the disease takes its toll such as a trip to ER last year for pain management of a ruptured cyst, however overall I am in a much better place.”
But she said she hopes sharing her story helps combat the “misconception that period pain is normal”.
“I had to see four different doctors before I was given a referral to see a gyno for my pain. I was so surprised that no one listened.
“Once a doctor even sniggered at me when I suggested I might have endometriosis after I’d done my own research about what might be causing my pain.
“It would be great to see the schooling system roll out support, knowledge and tools for young women who may be developing this disease unknowingly too.”
‘Significant cost to uncovering the cause of my infertility’
For Keira Rumble, the brains behind popular Beauty Bites bars sold in Coles, it was a rare dual pregnancy – and loss – that led to her discovering she’d been living with endometriosis for years.
The 33-year-old was diagnosed with a heterotopic pregnancy – a rare condition where at least two pregnancies are present simultaneously at different implantation sites with only one located in the uterine cavity. In Keira’s case, one was an ectopic pregnancy, attached to one of her fallopian tubes.
But despite surgery to remove her ruptured fallopian tube, the businesswoman’s pain only worsened, and at one stage it was so bad it left her “crying and screaming” on the floor.
“I suffered with extreme bloating, it was so bad I honestly looked about five months pregnant,” she told news.com.au.
“This was particularly distressing as I was actively trying for a baby and had suffered loss.
“Eventually I went to a specialist for the ongoing pain, and I had a deep ultrasound where they saw some adhesions and discovered that some of my organs were stuck together, which led to surgery that confirmed I had endometriosis.”
However, complications saw Keira fast-tracked for further surgery, which was then halted due to a pause on elective surgeries at the time as a result of the global pandemic.
“I had to wait about five months during the most horrendous flare up ever, which once again left me heavily bloated,” she shared.
“My belly was so bad, I had strangers asking me in the street when I was due, which was truly heartbreaking.
“It was like a very dark stage for me.”
Keira has since gone on to welcome two bubs, her son Hunter, 3, and nine-month-old daughter Goldie, with the help of IVF. But she still lives in intense pain every day.
“I have really, really bad ovulation pains every month as well as during my period,” she said.
“My endo catapulted into such an incredibly strong community of women living with the condition who have been so supportive and have helped me navigate this diagnosis.
“But I have bad days where I just have to stay at home and work from bed or, you know, ask for assistance when I’ve got the kids.”
Despite acknowledging how “hard” day-to-day life with endometriosis is, Keira – who also runs her own skincare business Habitual Beauty – said she’s in “a fortunate position”.
“I’m lucky due to the fact that I don’t have to take sick days. But who’s looking after those women that have to take time off to recover from their endo pain?
“It’s eating up into all their annual leave, and they’re sick days for something that’s not their fault. That’s where it really upsets me is that, you know, that’s something that’s very conscious of as a boss, especially as I’ve spent a significant amount on my treatment which isn’t something everyone can afford to do.”
‘Unbearable symptom stopped me going to the toilet’
In Elizabeth “Lizzie” Vega-Sobinoff’s case, her endometriosis was misdiagnosed for years, largely due to the fact the former reality TV star also lives with two auto-immune diseases.
But one of the main telltale signs for her was difficulty going to the toilet, which she described as “relentless”.
“I always had a fullness in my pelvic area. It always feels full, like I was weighted down with bricks in that area of my body,” the NDIS support worker told news.com.au.
“It was a strange sensation, you know how when you have a shower when you feel fresh after having a shower. Well, I don’t ever feel fresh. I always feel heavy.
“I was chronically constipated, like, I could not go. It would be very rare for me to go, which initially led doctors to believe I might have a bowel-related disorder.”
But after being tested for Crohn’s disease, a chronic inflammatory bowel disorder which can cause bathroom troubles and abdominal pain, doctors rule it out – eventually confirming Lizzie had endometriosis.
“My bowel was actually fine, but what was happening was the inflammation caused by the endometrial tissue attached to my uterus was so severe, it was affecting the whole pelvic area,” the 32-year-old, who welcomed her first child with husband Alex in November, said.
“Before I got pregnant, I felt like I had a constant UTI. It was actually unbearable.
“But surgery showed it wasn’t down to my endometriosis and I didn’t have any bacteria in my urethra, the pain was being caused by inflammation.”
The new mother, who explained she fell pregnant naturally, admits she’s still learning about how the chronic disease affects her. She’s found comfort in community groups such as The Endo Space, which have provided resources to help understand symptoms and pain better.
“It is just so debilitating and affects so many facets of my life. Even after sex with my husband, my belly will be flat and it will just swell up,” she candidly revealed.
“Unfortunately, because of my auto-immune conditions, taking the hormonal treatments recommended for endometriosis isn’t an option for me, so I have to find ways to manage my flare ups.
“I really hope they come up with some new treatment options soon, because it’s just horrific how many women are going through this, and we are just told to suck it up, you know, it’s normal for women to just live in pain.”
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.
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