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"I won't let endometriosis control my life"
When Girls creator and actress Lena Dunham wrote about her battle with endometriosis, she was speaking for 10 per cent of women, in Australia and around the world, who suffer from the chronic condition. Dunham’s story rang true for those women who regularly experience extreme pain, struggle with fertility, heavy periods and pain during ovulation and sex as a result of endometriosis, a debilitating condition caused when tissue similar to the lining of the uterus grows outside it.
The cause of endometriosis is still unknown, although Associate Professor Jason Abbott, Medical Director of Endometriosis Australia, says that “genetics play a strong role and it is therefore a condition for life.” In Australia there is around a seven year delay in diagnosis due to the difficulty in diagnosing the internal condition, and because many women normalise and suppress the pain.
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Real life pain
Suffering in silence is something that Sydney PR Jayde Balderston, 31, knows too well. Balderston was diagnosed with endometriosis at 18 years old, but notes she experienced the debilitating symptoms from as young as 11.
“The way I describe [the pain] is that to deal with it I need to lie on cold floor tiles, or in the foetal position, it’s agonising,” she tells Yahoo7 Health.
While there is no definitive cure for endometriosis and diagnosis is difficult, laparoscopic surgery – a keyhole procedure performed under general aesthetic – can help. Over the years Balderston has undergone eight procedures, each time returning straight back to work. She kept her painful battle with endometriosis a secret for most of her life.
“Until now my personality type hasn’t allowed it to affect [my life]. I’ve never missed work because of endometriosis pain, never missed a wedding, a birthday, a christening,” she says.
“I didn’t want that stigma of ‘you’re always sick’.”
Adding insult to injury, last year at 30 years old Balderston was diagnosed with cervical cancer. As a result, this month she will undergo a full hysterectomy, her ninth surgical procedure, and a final fight-back to beat the condition she’s been battling for two decades.
Yet to have children, the decision to undergo a hysterectomy was something that Balderston did not take lightly.
“My thing isn’t babies, but with what I’ve got coming up, I’ve had to make a decision that means no fertility for me. 31 is young, but it’s been a lifetime of pain, of heartache and the hardship that comes with hiding that. I want to have a healthy and happy life. That’s my goal,” she says.
Last year Balderston made the decision to share her story publicly, adding to the growing awareness and understanding of the disease.
Since speaking out Balderston says she has been “blown away” by the support from friends, family and acquaintances.
“The power of people talking and telling their stories is so important. I want every other woman with endometriosis who is suffering [in silence] to say something,” she says.
“Awareness is key, because then we get education and can start sorting it out.”
Miracle result
Raising awareness is a belief that Endometriosis Australia ambassador Elle Watmough, 25, also endorses. The model and wife of Parramatta Eels rugby league star Anthony Watmough, has lived with the crippling condition since the age of 16. For Watmough, and up to 50 per cent of women with endometriosis, difficulty falling pregnant was a symptom of the disease.
At 22 years, Watmough – who married her husband in 2013 – began IVF treatment, documenting her painful story on her personal blog.
“I started the IVF process when I was 22 years old. I want to scream sometimes, it is by far the most exhausting process we have been through,” Watmough wrote.
Since the blog posts were published Watmough says she's been inundated with support.
“Lots of women reached out [after the blog post] and said ‘I have had that pain for so long and never did anything about it’ or ‘I thought it was normal, but had it checked out,’” she told Yahoo7 Health.
After four rounds of IVF treatment, Watmough gave birth to her daughter, Jagger Rose at 33 weeks premature, in January this year, and hopes her miraculous story can help other endometriosis sufferers.
“It’s such a private struggle. I didn’t know anybody going through IVF at that age, but I’ve had women say things like ‘I’m 26 I’m doing IVF’ and you realise, ‘oh, I’m really not in this alone,” she says.
The new mum says her endometriosis journey and experience worth the heartache.
“Motherhood is exhausting, but so rewarding,” she says.
Women aren’t alone
For both women, educating themselves about endometriosis and their treatment options, which for Watmough has included completely overhauling her diet and cutting out inflammatory foods such as sugar and gluten, has been empowering.
As has refusing to settle for the chronic pain that comes with endometriosis.
“Women have to realise a little cramping is normal. [Feeling stabbing] in the guts isn’t normal, you’ve got to get [that] checked. I encourage women in educating themselves. And if something doesn’t feel right, it probably isn’t,” says Watmough.
As someone who’s battled the chronic condition for most of her life, a brave Balderston admits, while there’s no set cure in sight, she’s arrived at a new, empowered point in her endometriosis journey.
“I look back and see this utter strength. I also can’t believe how much I’ve tortured myself. I’m pretty proud of how much I truly trust myself, at the end of the day if I didn’t I wouldn’t be sitting here having plans and solutions.”
“My advice is to keep going. It’s easier to love yourself, the more you know about what you’re going through.”
Celebrities who suffer from endometriosis
PADMA LAKSHI: the author and co-founder of the Endometriosis Foundation of America, openly wrote about how her endometriosis battle affected her marriage to husband, Salman Rushdie. "Endometriosis was definitely a major reason that my marriage failed and I don't think either of us understood it at the time,” she told People magazine.
HILARY MANTEL: The Booker prize winning author penned an open foreword in Coping with Endometriosis by Dr Zara Aziz and Jill Eckersley, detailing how the disease has shadowed her life. “Abruptly I lost my fertility and, in some ways, lost myself … Anything I have achieved has been in the teeth of the disease,” she wrote.
LENA DUNHAM: Actress and author Lena Dunham recently wrote an essay of her long battle with the debilitating condition. “I know I'm lucky in the grand health scheme, but I also know that I am one of many women who grasp for a sense of consistent well-being, fight against the betrayals of their bodies, and who are often met with skepticism by doctors trained to view painful periods as the lot of women who should learn to grin and bear it,” she said.
Seven facts about endometriosis
Endometriosis is a disease in which the tissue that is similar to the lining of the womb grows outside it, primarily on the ovaries, pelvic peritoneum, recto-vaginal system, bladder and bowel, causing an inflammatory reaction.
1 in 10 Australian women suffers from endometriosis, with the disease often starting in teenagers.
Symptoms are variable, and there can be a 7 to 10 year delay in diagnosis.
According to Endometriosis Australia, endometriosis costs Australia $7.7 billion annually – two-thirds of which is attributed to loss in productivity and the remaining $2.5 billion coming from healthcare costs.
There is no cure for endometriosis. Surgery will remove endometriosis tissue but doesn’t address its underlying cause. There is a 35 per cent chance that it will reoccur post surgery.
Symptoms vary for all women, and treatments can reduce symptoms by 50 to 70 per cent for most women, while some women will have no relief.
Endometriosis pain is often related to the menstrual cycle, but can also come at any time throughout the month.
March is Endometriosis Awareness month. For more information visit endometriosisaustralia.org
