Talking Point: Dismissing the agony might delay an endometriosis diagnosis

EMMA HOPE: Don’t put up with this pain — shout it from the rooftops

SPEAK UP: We have suffered in silence for too long.

When I was diagnosed with endometriosis five years ago I had never even heard of the disease. Understandable, given that the symptoms are unseen, seldom spoken of, hard to describe, even harder to diagnose and too often passed off as “women’s problems”.

The average time for diagnosis of endometriosis is seven to 12 years. But for so many, like myself, it’s much, much longer. Much more drawn out. Much more painstaking. Years of going to the doctors and being told “yes, periods are painful, deal with it”. Years of spending two to three days a month in such agonising, debilitating pain I’m unable to move from my bed or the couch. Curled up with a hot water bottle, on strong medication, writhing around in pain so intense I would vomit.

Endometriosis is when tissue that normally lines the uterus grows outside the uterus. It is a condition affecting one in 10 women but the stigma attached to talking about periods means sufferers don’t discuss the condition as openly as they should. There is no prevention and no cure. It can only be diagnosed through surgery.

This month is Endometriosis Awareness Month. It’s time to shout it from the rooftops. We have suffered in silence for too long. We’ve been dismissed, not been believed, been made to feel like drama queens. This needs to change.

My message to young women is to listen to your body and if something doesn’t seem right, go to your doctor. Spending two days a month in agony, unable to leave the house is not normal.

I didn’t know I had endo until I had trouble conceiving (infertility is one of the many symptoms – others include fatigue, bloating, heavy or irregular bleeding). My first removal surgery was supposed to be a quick procedure but ended up being two hours. I got a post-op infection and ended up in hospital on Christmas Day where I had an allergic reaction to one of the drugs I was given and ended up in the Intensive Care Unit. The surgery did little to relieve my pain or improve my fertility and I was back under the knife 12 months later. This time the operation went smoothly (under a different surgeon) and I got some relief but it was short-lived and within a year I needed another operation.

At the end of last year I was referred to a specialist in Melbourne. He performed a three-hour operation and cut out as much endo as he safely could (in previous operations it was burnt off leaving scar tissue) and resected organs that were stuck together due to endo. I spent two days in hospital and received an incredible level of care. It’s no exaggeration to say that operation was life changing. My pain since has been manageable and my quality of life has improved drastically.

Yellow is the colour for endo, based on Australian wattle — which can withstand drought, wind and bushfires. The strength and resilience of women with endo constantly astounds me.

This month my social media feed has been filled with endo warriors bravely telling their stories. One who underwent a hysterectomy as a last resort after so many years of pain. Another who spent years trying to convince her doctor to perform a hysterectomy and who has been pain-free since and feels like a new woman. This is not always the case. Having a hysterectomy is not a cure and the damaging tissue can still grow in other areas of the body causing pain.

Then there are the stories of treatment — everything from acupuncture to extreme diets to homoeopathy to massage to yoga and mindfulness. For me the only thing that works are strong painkillers.

In 2018 the Federal Government announced Australia’s first Endometriosis Action Plan, $4.7 million to help with research and treatment. It’s a condition I’d lived with for a lot of my teens and all of my adult life. No doubt countless women have died without ever being treated for it. Never being given the gratification I was after my first laparoscopic surgery that the symptoms I’d suffered with were not just in my head. I felt vindicated but also saddened that it had been such a long journey to that point. It’s time to bring this silent condition into the light and put an end to endo.

Emma Hope is an award-winning journalist who spent seven years at the Mercury including as tourism and police reporter and its first social media editor. She works as a contributor and freelance media strategist.