Endometriosis Sufferers Are Crying Out For More Research – And While We Wait, Lives Are Being Put On Hold

I waited 10 years to be diagnosed with a debilitating, uncurable disease. Yet, a group of researchers thought it important to study the link between endometriosis and attractiveness. Doesn't that sound unfair? HuffPost UK opinion editor Lucy Pasha-Robinson writes.

Imagine living in chronic pain. The kind of bone-grinding pain that brings you to A&E in the middle of the night, or reduces you to a shivering wreck on your bathroom floor, or to leave the workforce, or to be unable to care for yourself.

Now, imagine someone telling you that pain was in your head, for years on end. That’s the experience of many living with endometriosis, an often debilitating condition that causes fibrous tissue similar to that found lining the uterus to grow elsewhere in the pelvis. The disease can cause scarring, cysts and internal adhesions. It can affect any of the reproductive organs, but also the bladder and the bowel and, more rarely, the diaphragm or the lungs.

“For researchers – and physicians at that – to spend precious time and resource examining this ludicrous link, instead of prioritising sufferers’ quality of life, is totally galling.”

Endometriosis sufferers are more likely to suffer from anxiety and depression, more likely to leave the workforce, and, on average, take seven and a half years to receive the validation of a diagnosis. In my case, I waited 10 to hear that I was chronically unwell, not just a hypochondriac – a decade in which the disease spread and irreparably damaged my internal organs.

Sufferers like me are crying out for more research into this condition that affects one in 10, for better treatment options, for more funding and greater awareness.

So you can imagine the outpouring of collective female rage when a 2012 study resurfaced this week on social media showing researchers had interrogated the vital link between “attractiveness and rectovaginal endometriosis”.

The title alone is so gratuitous that I initially thought it had to be a spoof. Or perhaps I was having a medication-induced nightmare? Alas no, my worst fears were confirmed – four Italian academics from the University of Milan actually thought this was worth studying, and published their research in the journal of Fertility and Sterility.

They found that women with rectovaginal endometriosis – an advanced form of the disease – were thinner, had larger breasts, and were judged to be more “attractive” than those without the disease.

There’s currently no cure for endometriosis – management options include the contraceptive pill, medically-induced menopause and/or surgery. All of which I have tried, are as fun as they sound, and have proved woefully inadequate in restoring any semblance of quality of life.

But hey, at least science says I’m more attractive for it?

For researchers – and physicians at that – to spend precious time and resource examining this ludicrous link, instead of prioritising sufferers’ quality of life is truly galling. The fact the study was funded and passed peer review in the first place speaks to the deep-rooted, historical prejudice against women in pain – and women’s lives as being secondary to those of men.

Lead author Associate Professor Paolo Vercellini defended the importance of the study after its publication, saying the authors had not trivialised the realities of the disease.

“We understand very well the suffering of women afflicted by this disease,” he said. “For this reason we are eager to investigate new ideas that might help shed light on the still unclear causes of endometriosis.”

That researchers chose to focus on women’s attractiveness – a subjective standard – rather than their genetic makeup, for example, can’t be ignored. And when endometriosis as a disease is so under-researched, it’s hard to accept Vercellini’s defence that this work could be an important gateway into increased understanding.

His isn’t the only study to prioritise a male viewpoint over women’s suffering. In 2018, a group of researchers published the study: Does Endometriosis Affect Sexual Activity and Satisfaction of the Man Partner?

When seemingly so little progress has been made to combat gender bias in the medical profession, no wonder so many of us – and not just endometriosis sufferers – are still furious over the 2012 research.

I want to read more research examining the impact of sexual pain on endometriosis sufferers’ mental health. I want to understand how pain management methods affect female libido. I want to see studies on the link between endometriosis and body dysmorphia. Surely any of these would give a greater insight into sufferers’ lived experience of the disease.

Endometriosis is a life-altering disease, with far-reaching consequences. We unquestionably need more research and more effective treatment options. And, more than anything, we deserve better than this.

Lucy Pasha-Robinson is Opinion Editor at HuffPost UK