Words || Hannah L. McHardy
At my worst, it was more than just the searing, stabbing pain in my abdomen. It was confusion, dizziness, the loss of an ability to hold conversation, concentrate on work or function in a normal way.
It took me five whole years to get a diagnosis for endometriosis, and strangely, that makes me one of the lucky ones. On average, it takes a woman with endometriosis eight years to receive diagnosis and treatment for her condition.
Endometriosis is a condition that affects an estimated one in ten women, or 700,000 women in Australia. Its symptoms include fatigue, heavy and/or irregular menstrual cycles, incontinence, pelvic inflammation, fertility issues and pain – a lot of pain. Pain during sex, pain in your back, in your legs, and most commonly, pain in the pelvic region.
Endometriosis is when tissue similar to that occurring inside the uterus, sprouts in places outside of the uterus, which can include the ovaries, bowel, ligaments, and bladder. It can transform from endometrium-like tissue into lesions, nodes, and cysts. In severe cases, fibrous scar tissue can form that may stick internal organs.
Sounds like a ball of fun, right? Even so, my experience with endometriosis is a positive story so far. After having visited countless specialists and practically groveled to be taken seriously, I was finally able to receive a laparoscopy in July 2018. The keyhole surgery is currently the only means for the definitive diagnosis and removal of endometriosis.
It is important here that I note the privilege of my situation. I am an educated white woman who’s had access to quality health care all my life. I had the resources to visit numerous doctors and parents who could afford the surgery. Although it shouldn’t be, my experience is an anomaly amongst the many thousands of women who go undiagnosed and untreated throughout their lives. The burden of endometriosis is much greater than the physical pain it causes. The effects can be psychological, social, and economic – hence the imperative for greater awareness of endometriosis in the community, especially amongst medical professionals.
Endometriosis is poorly understood, arduous to diagnose, and unfamiliar to the general public. The cause of the disorder is not yet known and despite the condition appearing as commonly as diabetes, it currently receives less than 5% of the funding amount. In 2016 diabetes research received $64.1m in comparison to the modest $837,433 allocated to endometriosis research by the National Health and Medical Research Council (NHMRC).
Thankfully, as of December 2017 The Australian Government Department of Health has announced a National Action Plan for Endometriosis. The aim of this new plan is to raise much-needed awareness of the condition, increase clinical management, address education about the disorder, and most importantly, fund research. The heavily supported action plan will be developed with the aid of the Australian Coalition for Endometriosis and Parliamentary Friends for Endometriosis Awareness and includes consultation with numerous clinicians, specialists and sufferers of endometriosis.
It’s incredibly frustrating that it has taken so long for those responsible to acknowledge that they have failed a large group of Australian women, spanning many generations. The existence of endometriosis is by no means news to the countless women who suffer from it, but the long-standing neglect of endometriosis is part of a pattern of disregard of women’s health issues. Too often the chronic pain that women experience is misdiagnosed or attributed to extraneous or irrelevant factors. I have first-hand experience of being dismissed as ‘hysterical’, a ‘drama queen’ or merely victim to a ‘low pain threshold’ by peers, teachers, and medical professionals.
There is a stigma attached to women’s reproductive and uterine health. It is a taboo topic and many sufferers of endometriosis are told time and time again that their pain is a normal part of being a woman. Approaching a medical professional takes time, effort, and money, and women are less likely to continue pursuing a diagnosis if their valid experiences are constantly rejected.
There is also an undeniable disparity when comparing the medical treatment of males and females. Research has found that women are more likely to be given sedatives as a solution to pain compared to males, who are more likely to receive pain medication. Additionally, women are more likely to be mistreated and misdiagnosed by health providers. Shockingly, this problem is not specific to endometriosis. Disparities have been found in the comparative diagnosis and treatment of males and females across many illnesses including dementia, chronic pain, mental illness, and heart disease. These disparities can be further intensified depending on the medical professional’s biases towards the ethnicity and faith of the women seeking help. Pointing out this disparity is important in order to highlight the social injustice in a system that is responsible for the care of women. It’s about time that women’s health is taken seriously.
The most disturbing experience I’ve had, consistent across all specialists I visited, was the prioritisation of `virginity’ over my health. I began to see specialists for abnormal pelvic pain when I was 13 years old. For many years I was refused certain tests and treatments as three of my doctors feared they would compromise the `integrity’ of my hymen, and by inference, my ‘value’ as a woman. These included the use of oral contraceptives and trans-vaginal ultrasounds that may have quickened the time it took to achieve relief or diagnosis for my endometriosis. Not only is the concept of physical virginity completely archaic, but for someone like myself who prefers partners of the same sex, the doctors’ heteronormative expectations of my sexual experience, and their refusal to use certain methods until I had sex with the opposite gender, was frankly frightening. I’m sure I’m not the only woman with this experience and it was alarming to be told that keeping my ‘purity’ intact for a future sexual partner was more important than my fertility or debilitating pain.
I’ve spoken to a lot of people about my endometriosis in an attempt to spread the word about my own experience, and hopefully educate those who aren’t familiar with the condition and its adverse effects on the lives of so many Australian women. Despite being one of the rare few who receive a surgical laparoscopy, my journey with endometriosis is not over. It’s my mission to educate others of the great emotional cost endometriosis results in, for individuals and families. Very few of my peers had ever heard of endometriosis before I discussed it with them. With any luck, articles like these and the growing coverage in mainstream news channels will encourage a more open dialogue surrounding the health of all women.
If you have experienced any of the symptoms mentioned in this article, please seek the help of a medical professional.