Endometriosis – It’s time to take women seriously
Twenty-eight-year-old endometriosis patient Leah, shared her story with Wesley Medical Research, in the hope of helping to change the lives of other women suffering from this debilitating disease.
“It took me 12 years and close to ten different doctors, before someone took my pain seriously. I was regularly throwing up, passing out and spending days in bed due to the pain but whenever I brought it up I was told that it was normal, to take some ibuprofen and get over it. It was devastating. I would go into the doctor’s office, doubled over in pain, losing so much blood I was fainting, just to be told that I should deal with it. I was denied medication because they thought I was drug-seeking— [the doctors] told me it couldn’t be that bad and it was all in my head.”
“I finally saw Dr Albert Jung, a gynaecologist at The Wesley Hospital, and within twenty minutes of being there we were discussing laparoscopic surgery to remove the endometriosis he assured me that I had.”
“For the first time, I felt heard.”
“I knew there was something wrong and for once I was being listened to, my concerns taken seriously, and I was trusted to know when something’s not right with my body.”
Endometriosis affects one in nine Australian women and is one of the leading causes of chronic pelvic pain, heavy and painful periods, and even infertility in women of reproductive age.
Despite its prevalence and severity of symptoms, it takes on average seven years for most sufferers to receive a diagnosis and receive appropriate treatment. All too often, women complaining of pain are dismissed, told that it’s normal period pain and to deal with it, or worse – that it’s all in their heads.
But times are changing.
Endometriosis is a often painful disease in which tissue similar to the tissue that normally lines the inside of a woman’s uterus—the endometrium—grows outside of her uterus. It can cause severe pain, irregular and heavy bleeding, dysfunction in the bowels and bladder, and painful intercourse amongst other symptoms.
Unfortunately, prolonged exposure to pain can cause damage to the nerves, resulting in chronic pain (that persists after the cause of the pain is rectified), and central sensitisation where the nerves overreact to stimuli causing simple things, like clothing touching the skin, to become painful. Pelvic floor hypertension often accompanies chronic pelvic pain, where the pelvic floor muscles are unable to relax after being tense for so long, resulting in bladder pain, inflammation and vaginal and external vulval pain.
“Two years after my endometriosis surgery, my pain is much better,” says Leah, “but my journey isn’t over. I have a lifetime of treatment ahead, but I have a fantastic team around to support me. I’m one of the unlucky ones who developed other conditions due to living with pain for nearly half my life. I now have to see psychiatrists for mental health, neurologists for referred pain, a cardiologist for postural orthostatic tachycardia syndrome (POTS), a pelvic physiotherapist, and am being investigated for autoimmune diseases, all because I had to wait almost half of my life in pain before someone took me seriously.”
“I have missed out on so many things due to pain—I had to withdraw from university, I’ve lost jobs, spent holidays in hospitals, missed out on spending time with my family and friends. I even nearly missed my own wedding. It’s a deceptive, hidden illness but it’s also so common. We need better representation, better treatments and quicker outcomes. You can’t tell by looking at someone if they have endometriosis or chronic pain but medical professionals need education so women like me don’t slip through the system and end up with lifelong issues, because we are not being heard.”
Want to find out how you can help? Wesley Medical Research is looking for patients not only undergoing bowel surgery but also patients with endometriosis and diverticulitis. Find out more about Wesley Medical Research’s Gastrografin Flush Study (GUSH) by visiting the website which is undertaken at The Wesley Hospital, and St Andrew’s War Memorial Hospital.
For more information about endometriosis and pelvic health, please visit:
QENDO – to help anyone affected by endometriosis, adenomyosis, PCOS, infertility or pelvic pain, by offering them the tools, services and programs to understand and take control of their health.
Endometriosis Australia – endeavours to increase recognition of endometriosis, provide endometriosis education programs, and help fund endometriosis research.
Pelvic Pain Foundation of Australia – a not-for-profit organisation formed to build a healthier and more productive community by improving the quality of life of people with pelvic pain.