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Why is it so difficult to diagnose endometriosis?

When young girls are educated on periods they are taught that cramping is a common symptom. I’m 13 years old. I’m sitting in my living room when suddenly I double over in agonising pain. My stomach is writhing, and I can hardly think from the pain. It passes eventually, and I go to the bathroom. I’m covered in blood from the waist down. With no one in the house, I call NHS 111. I can only think of one thing that could explain the unimaginable pain I just experienced. 

The NHS told me this was likely my first period, and that cramping happens to every woman. However, lessons on periods tend to be short and vague, with no attempts to distinguish between what are ‘normal’ levels of cramping, or ‘normal’ symptoms of a period, and what qualifies as abnormal – and potentially dangerous. 

This means that women and transmen who are experiencing severe pain as a result of their period are unlikely to seek medical help. For example, a recent survey from Endometriosis UK found that 62% of women aged 16-54 admit they would put off going to a doctor with symptoms of endometriosis because they think symptoms like painful periods are normal. 

Endometriosis is a condition that affects one in 10 women, in which tissue similar to the lining of the womb starts to grow in other places – often the ovaries or fallopian tubes, but sometimes in other areas such as the bladder. This means that there is a build-up of menstrual blood outside of the womb, but there is no way for this blood to escape. The tissue can then shed blood into places like the stomach, or into the individual’s fallopian tubes.

Symptoms can include pain during or after sex, bowel issues, nausea and vomiting, fatigue, depression, and infertility

This tends to cause extremely painful or heavy periods that prevent the individual from being able to go about their normal activities. Other symptoms can include pain during or after sex, bowel issues, nausea and vomiting, fatigue, depression, and infertility. In extreme cases, endometriosis can even lead to kidney failure if left untreated. 

That being said, endometriosis is yet to have a clear cure. Treatment focuses on management of symptoms through birth control – problematic for many as a result of the side effects birth control causes, and most go through a tricky period of trial and error. In serious cases, where ‘sticky’ areas of endometriosis tissue can join organs together, surgery is required to cut away patches of endometriosis tissue. Even after surgery, these sticky patches can come back, and some women find the only solution for the pain and complications of their condition to be the removal of certain organs, most often the womb. 

Despite the patchwork set of options available to those affected by the illness, with no certain cure for a lifelong debilitating condition, research on curing or treating endometriosis is severely underfunded. Endometriosis affects roughly the same number of women that diabetes does, but endometriosis-related research receives a tiny proportion of funding in comparison and lacks the awareness around it that diabetes has.

In comparison to the majority of patients with endometriosis, I have been extremely lucky

Research on how to diagnose endometriosis is limited too, and diagnosis takes on average 7.5 years since the first display of symptoms. I was told a year ago I was suspected of having endometriosis and had been referred for a diagnostic operation. I discovered on a phone call last week with my doctor that she hadn’t referred me to a gynaecologist who could then refer me for the operation because she thought my pain ‘wasn’t that bad’. I told her I miss four days of university every month as a result of the pain and she is now looking into referring me. In comparison to the majority of patients with endometriosis, I have been extremely lucky. 

The diagnosis of endometriosis is particularly difficult for Black women. Black women tend to be dismissed for a variety of reasons. One is that endometriosis is more likely to affect white or Asian women, so is not usually seen as a likely cause for period pain for women of colour. But another issue does involve the consistent worse care people of colour receive from their healthcare providers. For instance, Black women in the UK are four times more likely to die during pregnancy and childbirth. 

One South African woman discussed how she wasn’t given treatment for endometriosis by a doctor who said “you people…don’t take care of yourselves, and come here with your pelvic infections” and then dismissed her without examination. It is generally argued that there are more barriers to diagnosis for those from BAME communities, both internationally and in the UK. 

It appears an element of discrimination plays a large role in the delay of endometriosis diagnosis. It has also been suggested the delay is a result of sufferers not going to the doctor out of embarrassment or fear they won’t be taken seriously.  A diagnosis may also be difficult due to a lack of research funding and knowledge around endometriosis. This is suggested by many specialists to be a result of the fact that endometriosis only impacts upon women and transmen, and mostly during periods of menstruation. 

Some argue that because the condition is seen as a ‘women’s problem’, it is not given as high priority as other conditions. Frustratingly, some studies into endometriosis focused more on how it affected men’s sex lives than how it could derail a woman’s life. One study even focused on comparing the attractiveness of women with endometriosis against those without endometriosis.

One in three women in the UK will suffer from a reproductive or gynaecological problem, only 2.5% of public research tackles these conditions

Many argue the underfunding of endometriosis is part of a wider problem of women’s health, particularly women of colour’s health, being side-lined because of an androcentric bias in medical practices. For instance, despite the fact that one in three women in the UK will suffer from a reproductive or gynaecological problem, only 2.5% of public research tackles these conditions.

There is also the issue of a stigma around women’s reproductive functions. Research articles have suggested that diagnosis would be easier if there was more education around menstrual cycles, to help identify abnormal symptoms. Research also suggests that women are reluctant to discuss abnormal period symptoms with each other or a medical professional as a result of the stigma around conversations about periods. In fact, many women have reported going to doctors about abnormal period symptoms only to be dismissed by doctors who say things like it is ‘a normal part of being a woman’. 

Public discussions around endometriosis are therefore extremely important in order to raise awareness around a life debilitating condition which has been underfunded and marginalised as a result of who it affects. A key factor in improving the lot of those who are trying to get diagnosed with endometriosis is early and thorough education on periods, in order to help reduce stigma around discussing periods and to improve understanding of what normal symptoms are. 

While there have been many steps forward in getting rid of the taboo around periods, especially with the recent legislation abolishing tampon tax in the UK, it’s still a tricky topic for women to discuss, with each other and with their male friends or even partners. Periods are still often used as a punchline and it is viewed as ‘disgusting’ to bring up in casual conversation. Many men and boys still use euphemisms to describe a period; ‘on her reds’, ‘that time of the month’ and so on. How is a woman supposed to discuss the symptoms she experiences on her period, and the limits these symptoms are putting on her life, when those around her can’t even say the word ‘period’?

March is endometriosis awareness month, and the charity Endometriosis UK is calling for help to end the stigma around endometriosis, through a ‘one in 10’ fundraiser. Participants can sign up and are asked to fundraise for the charity by undertaking a ‘10’ related task – from running 10km to baking 10 cakes. Participants are also then asked to raise awareness of their activities on social media in order to reduce the stigma around discussing endometriosis symptoms publicly. For some people, having these conversations could be lifesaving.

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