The federal Health Minister, Greg Hunt, will seek $3.5 million for education programs and research into the women’s health issue that plagues 700,000 Australian women.
Endometriosis has been introduced to the public conversation after a number of celebrities have come out to share their stories. Actress and writer, Lena Dunham, famously underwent an invasive hysterectomy because of endometriosis. Australian singer and actress, Emma Watkins (aka the yellow wiggle), was admitted to the hospital and underwent surgery in response to severe pain attributed to endometriosis. She shares her journey with fans on instagram.
Though the stars have shared their stories, endometriosis is still a largely misunderstood and misdiagnosed chronic illness that affects 176 million women around the world.
What is Endometriosis?
Endometriosis is a common gynaecological disease that occurs when tissue similar to the lining of the uterus is found outside of the uterus. Donna Ciccia, director of Endometriosis Australia, explains that, “the areas of abnormal growth cause inflammation and can lead to scarring, cyst formation, and involvement of other organs (like the bowel and bladder)”.
Scar tissue may form and stick one organ to another. Endometriosis can cause the fallopian tubes to close and cause the formation of something called endometrioma. Endometrioma are dark, reddish-brown cysts or fluid-filled sacs on the ovaries that affect fertility.
She said that the most common symptoms are pain, which can manifest in many ways, “period pain, back pain, pain with intercourse, and pain with bowel movements, infertility and abnormal bleeding”.
Aside from chronic pain, Syl Freedman, co-founder of the non-profit organization EndoActive, told me what it’s like to just live with endometriosis. She said it takes a really big toll on her immune system, energy levels and mental health. “Things like the flu or cold, that last a few days for some people will knock me off my feet for weeks”, she said.
“Even when I feel energetic, I know I’ll crash at some point”
A Two Part Initiative
In response to advocacy groups like EdnoActive and Endometriosis Australia, Health Minister, Greg Hunt announced an endometriosis action plan included in the federal budget for the year. There are two parts to the national initiative.
They have allocated $1 million over three years beginning during the 2018-2019 fiscal year, to increase awareness of endometriosis among women and the general practitioners that treat them. That first proposal is also to be used to assist in the financial burden posed by a chronic illness like endometriosis and to increase care options.
Part two of the government’s fiscal initiative is the $2.5 million dollars for the first National Action Plan for Endometriosis that was announced in April. These millions are for research to better understand endometriosis and those research areas will include prevention, treatment and, fingers crossed, a cure for endometriosis.
Syl Freedman, in corroboration with the Australian Coalition for Endometriosis said, “All the major areas need funding like school education, public community awareness, GP education and university education for up and coming medical students who are, and will be conducting research. That’s going to require a huge, huge amount of money. It’s a great start but there is a long way to go”.
The final draft will be released later this year.
A Step in the Right Direction
For the 700,000 women in Australia that live with endometriosis, it is estimated that on average it will take a women between seven and 10 years to be properly diagnosed. A number of reasons explain why that it this. When women are young and first begin to experience the miracle of monthly menstruation, they are taught to expect pain and that that pain was normal.
Normalizing period pain is problematic and potentially detrimental. Friends and family aren’t the only influences that normalize this kind of pain. School nurses are generally uneducated and unequipped to properly spot signs and symptoms of endometriosis and general practitioners often lack the necessary resources to treat and support women that experience symptoms.
The disease is personally, and physically painful but, research shows how much a woman gives up financially living with endometriosis. A woman with endometriosis loses about $8,000 a year in lost productivity. That sum accumulates from an inability to work while managing pain.
‘A woman with endometriosis will lose $8,ooo a year in lost productivity’
In terms of direct health care costs, the average woman with endometriosis will spend almost $4,000 a year. Health care costs include trips to pricey specialists and surgery procedures.
Nationally, endometriosis costs society $7.7 billion annually. Only $2.5 billion of that is attributed to direct health care costs. The rest of that $7.7 billion are due to losses in productivity. These figures say something about the contribution women make to society. This study also offered a comparison for reference. Diabetes is identified as one of the most burdensome chronic conditions in Australia, yet only costs about $1 billion annually (PDF) in direct healthcare costs.
Apart from the financial burden, endometriosis is costly in terms of mental health and overall well being. Personal and intimate relationships suffer while chronic illness can negatively affect mood and ability to do simple everyday activities.
Australia loses a lot when women are not able to contribute to the workforce because they are sick. We need to tell women that they matter and that their pain matters. Further research to understand what triggers this illness, what we can do to manage it, possible cures, and educating the masses is what society and our women need.
A Life with Endometriosis
Unfortunately there is not yet a cure for endometriosis. This is something a woman will have to manage for a while, but there are options.
A laparoscopy is the only concrete way to confirm a diagnoses, but it is a treatment option as well. A laparoscopy is a non-invasive surgical operation where the surgeon inserts a small lighted instrument called a laparoscope into the abdomen. During the procedure, the surgeon will confirm the amount of endometriosis and either remove or destroy the endometrial tissue. Removing the tissue however isn’t a cure all, endometriosis tissue can/will grow back.
Avenues for treatment depend on priorities. If fertility is the priority there are options for that, but none have been thoroughly proven by the scientific community. A visit with a fertility specialist is recommended.
More options are available for managing and treating pain. Simple pain-relievers may help, hormonal treatments like a birth control pill, or more invasive surgeries like a hysterectomy or bowel surgery (uncommon, but endometriosis can affect the wall of the bowel).
“Sleeping better and watching my diet changed my life”
Syl shared some of the treatment options that have drastically changed her disposition.“It’s not really up to just taking a pill or having surgery. It’s lifestyle changes. Sleeping better and watching my diet changed my life”. Pain management, and lifestyle changes helped her minimize the symptoms of endometriosis and begin to live a normal life.
With Syl as inspiration, I’ve collected natural, at-home, treatment options and lifestyle changes to help manage the symptoms of endometriosis.