Endometriosis is affecting 1 in 10 individuals born with a womb, however why have a majority of the population never heard of it? 

“you don’t necessarily hear of endometriosis unless you have it”

Amongst the NHS’ Top 20 health conditions known to cause debilitating pain, endometriosis sits at number 15. The gynaecological condition refers to tissue, similar to that of the lining of the womb, growing elsewhere in the body. Every month just like the lining of the uterus, endometrial tissue acts in the same way. Causing excruciating and heavy periods, IBS symptoms, thoracic pain and pain when having sex. 

Like many, you don’t necessarily hear of endometriosis unless you have it, or are awaiting a diagnosis. When I was twelve, I got my period. I spent the next day at school in hot sweats, severe stomach cramps and ended up fainting. At the age of nearly 21, not much has changed. The hot sweats are still here, the stomach cramps are even more debilitating and my fight for a diagnosis has continued into its ninth year.

Periods and Politics

It’s this lengthy diagnosis time that led MPs to lead an investigation into the support and diagnosis time of endometriosis. Through an All-Party Political group inquiry, with more than 10,000 people taking part, it was reported that 58% of individuals visited the GP over ten times. With a further 53% going to A&E with symptoms before receiving a diagnosis. 

From the investigation, MPs also discovered the ways endometriosis affects a person’s life in all aspects rather than just when they are menstruating. They found the condition had affected people’s mental health, career plans and education. Amongst the findings, 89% of people felt isolated due to the condition. 

Chair of the inquiry, Conservative MP Sir David Amess said: “It is not acceptable that endometriosis and its potentially debilitating and damaging symptoms are often ignored or not taken seriously – or downplayed as linked to the menstrual cycle and periods.”

It’s this ignorance and undermining of symptoms, a majority of people who have tried to get an endometriosis diagnosis will have experienced. 

Diagnosis 

Diagnosis time averages at 7.5 years however this number varies across the United Kingdom. In England the average time for an endometriosis diagnosis is 8 years. Whereas it takes around 8.5 years in Scotland and Northern Ireland and 9 years in Wales. 

Faye Farthings, Campaigns Manager for the charity Endometriosis UK said: “Comments such as ‘just get on with it’, ‘the pain is all in your head’, or even myths such as ‘just get pregnant and your endometriosis will be cured’, must become a thing of the past if we are to ensure those with endometriosis are accessing the support they need to manage this condition, and to reduce diagnosis time which currently averages at a shocking 8.5 years in Scotland. There is no cure for endometriosis, and it’s time to call an end to such myths.” 

A number of things can contribute to a longer diagnosis time; not being able to see a gynaecologist, having a little understanding of symptoms and a decreased level of awareness in what endometriosis is and the symptoms it causes. However anyone who’s tried to get a diagnosis will possibly have at least one horror story or recall a doctor’s appointment that filled them with dread. 

My own doctor’s appointments over the years have been like this with the infuriating phrase, “it’s just a painful period” or times where I’ve sobbed in front of numerous health care professionals in the hope that someone will believe me. 

Treatment and Gender Bias

At the minute, there is no cure for endometriosis and the type of language used when discussing treatment and pain management is important. For some, the pill is an option to help with symptoms; others resort to a hysterectomy. However, none of these options cure the condition and neither does getting pregnant. 

“all someone wants to feel is believed and that it’s not all going on in their head.”

What’s apparent in women’s health care is a lack of understanding and patients being overlooked. This is a major contributing factor to the ‘gender health gap’ and ‘gender pain gap’. In particular, the gender pain gap refers to the unconscious bias towards women’s health issues and research. Daye refers to the gender pain gap as “Centuries of unconscious bias and a lack of research has created a phenomenon where women are often neglected, misdiagnosed or prescribed the wrong treatment.” 

As the conversation increases, all someone wants to feel is believed and that it’s not all going on in their head. I still don’t have a diagnosis, however, whether you have one or not, I see you, I hear you and I believe you. 

Endometriosis Symptoms (according to Endometriosis UK):  

  • Painful, heavy or irregular periods 
  • Pain during or after sex 
  • Infertility 
  • Painful bowel movements 
  • Fatigue 

Neve Gordon-Farleigh

Photo by Sydney Sims on Unsplash. Image licence found here. No changes have been made to this image.

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