I was holidaying in Noosa when, for the first time in my 39 years of life, I called for an ambulance.
I had a deep, pulsating pain that ran through my lower stomach, my back, and down my left leg. It felt like something inside me was tearing me to shreds. I had waited too long to call an ambulance. I could hardly construct a sentence, could not stand, had vomited multiple times from the pain, and my body was shaking uncontrollably.
A friend called 000 and described it as ‘period pain’. We were told that ambulances were only for emergencies and that I would have to make my own way to hospital. I knew I could not walk, let alone get into a cab, so I lay crying on the hotel bathroom floor until the pain became so bad that I passed out.
This is adenomyosis. Described as the ‘evil cousin’ of endometriosis, adenomyosis seems to have additional debilitating symptoms, less recognition, less understanding, and is even more likely to be a ‘missed’ diagnosis for many years.
Adenomyosis occurs when endometrial tissue grows into the muscular wall of the uterus (whereas endometriosis occurs where tissue grows outside of the uterus). It can result in an enlarged uterus, painful and heavy periods and other debilitating symptoms.
The condition affects between 20% to 65% of females. These numbers are so broad because there’s such a lack of research and uncertainty around diagnosis that we can’t say for certain how many women suffer from it.
When I was diagnosed with adenomyosis, I was presented with two options: a hysterectomy, or life on medication. I wanted neither, so I found a third option: Uterine Artery Embolisation. UAE surgery had a high chance of successfully reducing my pain while allowing me to keep my uterus, but my fight was far from over.
Shockingly, despite my private health coverage including gynaecology, my provider refused to cover the costs, insisting that my surgery was heart related because of the Medicare number associated with the procedure. I made a complaint to the Health Ombudsman in a bid to have the surgery covered as a gynaecological procedure (given we are talking about my uterus here!). The Ombudsman intervened and my operation costs were covered. I’ve now been completely pain free for over a year.
But far more shocking than my own story, is the fact that these issues seem to be commonplace in the healthcare world of Adenomyosis. Women on private health cover are being rejected funds to cover a UAE procedure because of confusing Medicare categorisation, and other women I have spoken to were never aware that UAE surgery was a third treatment option.
After getting my diagnosis, I read some of the most shocking stories that women have had to endure – some for many decades.
Many women who suffer with adenomyosis are victims of medical gaslighting, having been told for years that the pain is in their head, or that period pain is normal. Without private health cover, most women have very few options for treatment and can spend their lives on pain medication. For many, a diagnosis is next to impossible: the most reliable scans are not covered by Medicare, leaving women hundreds of dollars out of pocket and leaving those who can’t afford the scans with no definitive explanation for their chronic pain.
It shouldn’t be this way. When there aren’t enough women in parliament and other places of power, women and women’s health gets overlooked. Adenomyosis is another example of the healthcare gender bias, where a lack of funding for women’s health remains a huge issue, especially for health issues around reproduction.
The gaps in service and research into women’s health issues are astounding. We need greater funding in this space, proper support networks, and a Medicare system that recognises and supports the investigation and treatment of female health issues.
Recently, the Parliamentary Friends of Women’s Health joined forces for an urgent call for a Federal and State funding package to improve early diagnosis and support for women with adenomyosis and the creation of an expert advisory panel to Federal and State Governments on adenomyosis.
As women, we need health professionals to take our symptoms seriously, to listen, and help us find answers – so that no woman suffering with adenomyosis falls through the system, or is the victim of medical gaslighting again.
My gynaecologist told me, ‘your pain is not normal’, and she’s right. If painkillers aren’t enough, if the pain is so bad it’s in your back or running down your leg, if you have to cancel plans or take time off work, if you have to change a tampon every 20 minutes – none of this should be considered normal.
If you think you might be suffering from adenomyosis, find a GP who will take your symptoms seriously and make sure you have all the options. Check out:
https://www.endometriosisaustralia.org/ and https://www.sydneyfibroidclinic.com.au/
