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Endometriosis Care Needs More than Conversations

Recently there has been a lot of “noise” around endometriosis.  As a disease that is thought to affect 1 in 10 people assigned female at birth, this should be fairly common.  It’s a painful, debilitating disease, which can impact the lives of those affected from puberty through their lifespan so you might expect a lot of fundraising, talking and attention on research activities. 

Except that’s not the case.  Despite the high prevalence and very real impact of endometriosis on people’s daily lives, it does not receive proportionate attention.

As someone who lives with endometriosis I was, therefore, excited when, on the 9th of August, it was announced that Channel 5 would be airing a documentary that would look at a range of health topics affecting primarily women, including endometriosis. 

Unfortunately, like many members of the endometriosis community, I was disappointed.  The 55 minute episode featured a total of approximately 7 minutes on endometriosis with the tone and emphasis very much being on women’s “stories” of suffering and a large portion of the total segment being focused on costly, private physiotherapy.  

Talking about endometriosis can be very difficult. The disease is associated with gynaecology (although inflammation and cells can be found anywhere in the body) and so carries a certain “stigma”.

The pain, the daily impact on our lives and the trauma experienced by many while seeking a diagnosis and/or treatment mean that it can be a very emotionally raw topic.  With this in mind, I am grateful to the women who shared their stories in the piece, but I do find using people’s “stories” (unless used very thoughtfully) problematic, for the most part.  

For many reasons sharing your personal health story can be challenging, but people do it because they want to see change and want to improve the healthcare landscape for others.  This means that sharing your personal health story should be empowering. 

It should be part of a wider context and drive to achieve change and it should be representative of the diversity of the community affected – in the Channel 5 segment there were five women, mostly of a similar age and four out of five were white, with what appeared to be no representation of intersectionality.  

Story sharing should not be an exploitative box-ticking exercise and, certainly, it should never be used as the sole, or primary method of “raising awareness”.

I hope, in this case, the women were supported and that a place of psychological safety was created for them. 

We urgently need to see an increased understanding of endometriosis and of course, I want to see people feeling comfortable having conversations about endometriosis. However, it feels like people are being encouraged to “have conversations” about endometriosis as if that alone will make the difference we need.

The difference we need is actually multi-faceted and covers social and medical topics.  On 20th July the new ‘Women’s Health Strategy for England’ was launched and there was hope that it would address some of the changes needed in the endometriosis arena. 

Created following an open evidence submission and public survey (to which over 100, 000 people from across England responded) the strategy sets out a range of commitments to women’s health – that should be made over the next ten years. 

It includes commitments in areas such as “women’s voices”, “information and awareness” and “research and evidence” in general terms, as well as focusing on eight “priority areas”, one of which is “Menstrual health and gynaecological conditions”, including endometriosis.  

The Strategy has been written very convincingly and highlights all the “right” things; however, the commitments fall woefully short of offering real-term change in outcomes for those living with endometriosis. 

The ambitions around endometriosis put forward in the Strategy are, at best, poorly defined; there is an obvious lack of financial commitment and very little mention of when and how any of the ambitions will be met.

At worst, they’re harmful; there is a heavy reliance on endometrial ablation (burning spots of endometriosis with a laser), which is widely recognised by the endometriosis community as being much less effective than, for example excision (the removal of endometrial spots by cutting them out).  

There is also a disappointing lack of ambition to invest in research that could actually affect our understanding of the disease. 

At the moment, science doesn’t know what causes endometriosis, it hasn’t found a cure and diagnosis requires surgery, yet there is no commitment to conduct research into the cause or improved diagnosis and treatment of endometriosis. 

The Scottish “Women’s Health Plan”, released last year, is stronger on some of these commitments, but not, noticeably, on commitments to research that could really change the landscape.

Poor, outdated and incorrect information on endometriosis is highly prevalent and is a huge problem faced by the endometriosis community (it prevents people seeking the help and treatment they need and deserve) and, worryingly, it’s still peddled by sources you would expect to be reliable. 

On 11th August, an endometriosis advocate highlighted that charity Endometriosis UK had posted a previously removed video on their YouTube account that contained misinformation about treatment and diagnosis of endometriosis.  Rather than remove the video, they appear to have defended the content saying that it had been taken out of context. 

Advocate-led social media accounts (such as The Endo Informer) are working hard to combat this misinformation, but there shouldn’t be a need for endometriosis sufferers to do this. It should be the responsibility of the medical community.  The fact that lived-experience endometriosis advocacy accounts and groups exist in abundance on every social media platform I’m on demonstrates to me just how far we have to go with endometriosis. 

I’m following these accounts and doing my own learning (I know that there are things I have wrong and/or don’t understand yet), but educating endometriosis sufferers and the wider public shouldn’t be a burden placed on the endometriosis community.  

Awareness raising and conversations aren’t enough. Story sharing isn’t enough. 

We need real, quality education, genuine improved access to diagnosis and treatment services that help and real research into less invasive diagnostic procedures, what actually causes the disease and better ways to treat it. 

It’s time to move things forward with endometriosis.

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