Endometriosis Sufferers Are Fighting For So Much More Than A Diagnosis

I thought diagnosis would set me on a path of effective management. Instead, it catapulted me on to an ever-turning carousel of medical interventions that lasted the rest of the decade, writes Lucy Pasha-Robinson.

Endometriosis is having a moment. While 10 years ago, talk of the disease was met with “endo-what?”, it’s now a recognisable, if poorly understood, staple in our lexicon around women’s health.

This boom in public awareness is due, in part, to an outpouring of literature on the subject by authors desperate to name their pain. These are women who have been let down by the medical establishment and its historic dearth of understanding when it comes to gynaecological health conditions.

Yet, even though we’re talking about endometriosis more than ever, diagnosis still takes an average of eight years, according to a new report by the All Party Parliamentary Group on Endometriosis – a figure that, shockingly, hasn’t improved in more than a decade.

Now, MPs are calling on the government to commit to reducing diagnosis times to a target of four years or less by 2025, and one year or less by 2030.

Reducing delays to diagnosis is vital because endometriosis is a progressive disease, staged much like cancer, which causes fibrous tissue, similar to that found lining the uterus, to grow elsewhere in the pelvis. If I had been diagnosed when I first started displaying symptoms in my teens, perhaps my disease would have been caught at an earlier stage, and my prognosis more favourable.

But for me, improving diagnosis times is really just one part of the complicated unpicking of a patriarchal medical legacy.

To improve outcomes for endometriosis patients, we urgently need to turn our attention to the too often barbaric treatment options that are offered to women. Currently, there is no cure for endometriosis, and treatment is limited to surgery, hormones, or pain management. We’re hardly spoilt for choice.

For a disease that affects at least one in 10 women, we need to question why we still know so little about it.

Grace Cary via Getty Images

I was relieved when I found out I had stage 4 endometriosis in 2014. Finally, I was able to put a name to the horrors I had been experiencing. Most importantly, I thought having a diagnosis would set me on a path of effective management.

Instead, it hurtled me on to an ever-turning carousel of medical interventions that lasted the rest of the decade, and brought with them much distress and little relief. I spent most of my twenties in a cycle of surgery, followed by chemical menopause treatment, followed by recurrence – rinse and repeat.

These treatments, inevitably, had a substantial knock on effect on almost every part of my life, from my mental health to my career and relationships. They also carry risks of their own. One of my surgeries left me with irreparable nerve damage, while the menopause treatment caused half my hair to fall out.

You might think my experience sounds shocking, or unusual. But this latest report by the APPG into endometriosis shows how run of the mill my story is.

It found 58% of people visited the GP more than 10 times before diagnosis and 53% had attended A&E with symptoms before diagnosis. Around 90% said they would have liked access to psychological support but were never offered it, and 35% had a reduced income due to endometriosis. It also highlights the specific barriers faced by women of colour in accessing adequate care.

But more than affirming how common such negative interactions with the medical community are for women in pain, this latest report points to a much larger task – the need to dismantle the systemic bias that still pervades attitudes towards women’s health, from the doctor’s waiting room to the lab.

If we want to see better outcomes for women’s suffering, we must demand more research. And not just more research, but better research – on things that really matter to sufferers. Like, why this disease occurs, and how to fix it. Is that really so ambitious? This disease has robbed me and others like me of so much. Why shouldn’t we be demanding more radical solutions.

Lucy Pasha-Robinson is opinion editor at HuffPost UK.