Getting To Know Endo - Kylie Johnson
As women we often hide our physical and emotional pain, to the discredit of ourselves as well as those around us. We simply don’t have the time to rest our tired and hurting bodies. We work full-time and still do the lion’s share of the household chores. We’re mothers, with or without a co-parent, that will always put our children’s health before our own. We’re told that our pain is just par for the course or not real at all. This may be part of the reason why endometriosis sufferers have gone unheard and untreated for so long.
Last month MP Greg Hunt announced the first National Action Plan for Endometriosis. This plan combines the thoughts, ideas and experiences from medical experts and those living with endometriosis together into a plan of attack. The action plan will hopefully provide a ‘gold standard’ of treatment and care in Australia, as well as secure funding for much needed further research.
The Action Plan is long overdue, as any person suffering the life changing effects of living with endo will tell you. One of these people is Nurse, Midwife and mother of two Kylie Johnson who had end stage endometriosis. Kylie was first diagnosed when she was just 14 years old and experiencing periods so painful, she often found herself in the sick bay at school or driven home by the Principal. She says that nothing much was done at the time to treat her for the disease.
“I was diagnosed really young. Most people with endo take up to 10 years to be diagnosed because of the complete lack of medical understanding of endometriosis”.
Endometriosis has traditionally been diagnosed through a vaginal examination because it’s a disease of the reproductive organs, right? Actually, endometrium cells have been found growing in the body of an endometriosis sufferer everywhere from the lungs, bladder, ureter and bowel. Then when these cells begin to shed as the endometrium naturally does, so comes the crippling pain and extreme physical symptoms sufferers’ experience. So a vaginal examination may not even reveal half the problem, if any at all. It’s simply not enough.
Once Kylie sought treatment for her endo she was pinballed back and forth between her GP, gynaecologist and bowel surgeon, then told to go back to her gynaecologist. Along the way she was told that perhaps it was her diet causing the distension of her bowel, which made her look 8 months pregnant at times. Eventually a doctor suggested that she see a psychologist, suggesting that this very physical disease was all in her head.
“I believe it’s also directly related to the old ‘hysteria’ mentality, that women are hysterical when they say they’re in pain or sick. I’m very lucky that I’m a nurse and a midwife so I’ve been able to navigate the system in a way so many women can’t. But I have felt like crap, I have felt unheard, like I’m nothing and turned away”.
Last year Kylie, with the advice from a surgeon from Sydney, decided to undergo a hysterectomy, leaving only one ovary behind to stop her from going into early menopause. That was also the year that Kylie was at her worst healthwise, having suffered a distension for 72 days. After seeing 4 gynaecologists and getting nowhere, she found her surgeon through a simple Google search.
“For my surgery I had 20 specialists come to watch. The surgeon took 50 minutes just to get to my uterus because my bowel was completely stuck on top of itself. I have a retroverted uterus, which is not an uncommon thing, but my ovary was actually stuck inside my uterus. The endometriosis had sealed my uterus on top of my ovary. I had huge back endometriomas the size of cricket balls”.
Kylie described feeling immediately different after her surgery but that she feels that endometriosis is growing back already. However, she is just one woman out of many whom are fighting the endo battle. Many women seek hysterectomies as a final form of treatment, only to be turned away by doctors who believe they know what is best for their patient.
“They’re being told no because they might still want to have children. Whose business is that? It’s a little bit patriarchal and I think there’s a lot of that going on. It’s not just men, it’s also female doctors who are socialised into seeing female patients in a certain way”.
Although there is still much work to be done in the fight against endometriosis, The National Action Plan is undoubtedly a step in the right direction. It is essential that the discussion around endometriosis continues so that women cease to feel silenced when they talk about their health or admit that they are hurting. If you think that endometriosis doesn’t affect you, please go ask a friend, sister, mother or auntie and you will undoubtedly find a story that needs to be heard and told.
Words by Alicia Franceschini