There’s an Insidious Reason Why It Takes So Long to Diagnose Endometriosis


Former Miss Ireland, Chelsea Farrell, recently shared the story of how she ended up in the emergency room in severe pain with a twisted ovarian cyst.

After over two-and-a-half years of symptoms, Farrell found out she had endometriosis, polycystic ovary syndrome (PCOS), an ovarian cyst. She had suffered pain, irregular periods, bloating pain during sex, but thought this was normal.

 

Farrell’s story isn’t unique. Many women face difficulties getting diagnoses, care treatment for such conditions – with some women even reportedly waiting up to 12 years for help.

There are many complex reasons behind why women with these conditions wait so long for proper help treatment. But part of it comes down to how women’s pain is often normalized dismissed in healthcare settings – even society more widely.

In 2020, an Oxford school caused controversy after suggesting girls should not miss school because of period pain. It reportedly stated: “Learning to deal with a monthly inconvenience is all part of being a woman.”

Not only does this show a lack of understanding of how debilitating menstrual pain can be, but also how girls are taught early on to endure pain rather than to seek help or medical advice.

This could also mean girls living with possible signs of endometriosis or PCOS won’t seek the help that they need. In fact, many women with PCOS or endometriosis report they felt expected not to complain “get on with it”, to accept that “it’s a woman’s lot to suffer.”

This attitude means that women are often not involved in their own care that their complaints are often dismissed as “women’s problems”. This “arrogant culture” of not taking women’s concerns seriously has even led to decades of medical scandals, avoidable patient harm, needless suffering.

 

Unnecessary wait

For the last decade, the average wait for an endometriosis diagnosis in the UK is eight years. Patients often have up to ten doctor visits before being diagnosed.

For PCOS, it can often take more than two years appointments with around three doctors for a diagnosis. Both endometriosis PCOS are complex conditions with symptoms that may vary widely also resemble other conditions. So, the diagnostic process is also complex, which explains to some extent why diagnosis is slow.

But complexity around diagnosis is not just about symptoms. The UK government’s recent Women’s Health Survey captured how women continue to be dismissed ignored when seeking care. It can be difficult for them to put their pain into words they report not always being believed.

Having their pain dismissed leads many women on a quest for “credibility” in the hopes of being believed that symptoms are not just “in their head”. But when your experiences aren’t believed by healthcare professionals, it can lead to lower self esteem even depression.

 

Gender health gap

The struggles that many women experience when trying to receive a diagnosis for these types of conditions is part of a larger problem when it comes to women’s health. Historically, women have experienced inequality in the kind of healthcare treatment they have received – which is known as the gender health gap.

The gender health gap may explain why women are more likely to suffer poorer outcomes when treated by male doctors. It may also be why women are more likely to die from heart attacks, as their symptoms can be different from men’s, whose symptoms still dominate medical textbooks messaging around first aid.

Women’s pain is treated less aggressively than men’s even when they rate it more severely, it lasts longer or occurs more often.

The gender health gap is even wider for black women living in the US UK. Black women are less likely to be diagnosed with endometriosis than white women. They’re also more likely to develop uterine fibroids are significantly more likely to have debilitating symptoms because of them.

 

Black women may also be more disproportionately affected by PCOS. Though the reasons for this aren’t fully understood, it might partly be due to poorer access to healthcare.

While problems with women’s health are increasingly being recognized, repeated calls in the past to raise awareness education for girls, women, healthcare professionals haven’t led to much-needed change. It’s essential that better, evidence-based resources are developed for both women health professionals to ensure that every woman – no matter her health needs or experiences – can receive the right care.

But it’s simplistic to assume that the difficulties women face in accessing equitable healthcare the right diagnosis will be solved by more information alone.

We must also address the larger societal issues of stigmatizing de-prioritizing women’s health, the inadequate funding for women’s health research the implicit gender racial biases that underpin current health inequalities.

It’s unlikely that significant changes in the way women’s healthcare is delivered will happen anytime soon. So for now, it will be important that women continue to advocate for their own health.

If you suspect you may have endometriosis or PCOS, continue to seek help. Consider keeping track of your pain symptoms so you can discuss them with your GP. Remember, pain is not something you have to put up with.

Anne-Marie Boylan, Departmental Lecturer & Senior Research Fellow, University of Oxford; Annalise Weckesser, Senior Research Fellow, Medical Anthropology, Birmingham City University, Sharon Dixon, Researcher, Primary Care Health Sciences, University of Oxford.

This article is republished from The Conversation under a Creative Commons license. Read the original article.

 



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