Mistreated, Misunderstood: The Illness Affecting Millions of Women, Many of Whom Don’t Even Know It Yet.

Endometriosis is a condition where tissue similar to the lining of the womb grows in other places. It can cause severe pain, bleeding, scar tissue, nausea, infertility and more. 1 in 9 people born with a uterus (I like to call us womb wielders!) live with it, and there’s currently no definitive cure. Despite how common it is, the cause of the disease is not yet clear. The diagnostic process is long and complex, with the average person waiting 6 to 8 years from the onset of symptoms to find out that it’s endo. It can impact every aspect of people’s lives, and that’s why it’s so important that we raise awareness and push for change. 

Endometriosis  is frequently referred to as a ‘women’s disease’. Whilst it primarily affects those with  female reproductive organs, it is important to remember that non-binary and trans individuals can suffer from endometriosis, and can face  even more barriers before getting the care they need. This is also an issue for people of colour, who are less likely to get an accurate diagnosis compared to  a white person. Living with a debilitating chronic illness is hard enough; changes must be made to the healthcare system to ensure that everyone gets treatment, not just  straight, cisgender white women. 

The symptoms of endometriosis are regularly ignored and  dismissed as attention seeking. Common ignorances include believing that people with endometriosis have a low pain tolerance or are being ‘dramatic’ towards ‘normal symptoms’ This can be especially detrimental to young people, as many are left with very little support and are  gaslighted  by friends, family, and even medical professionals. This in turn can have a devastating impact on an individual’s mental health, sometimes even causing them to question their own sanity.  

Endometriosis is an  illness which affects each person differently, but some of the most common symptoms include:

  • Period pain that interferes with day-to-day activities 
  • Pain during or after sexual intercourse
  • Heavy bleeding
  • Long periods
  • Severe migraines during your period
  • Bleeding between periods
  • Fatigue
  • Bloating which is often referred to as ‘endo belly’

The best way to get a proper diagnosis is to have a laparoscopy done by an endometriosis specialist, A laparoscopy is an operation where you are put to sleep, and the surgeon makes small incisions in your abdomen so that they can look for, and hopefully remove, any problems like endometriosis that are present. Unfortunately, this is easier said than done!

Endo Support United is a diverse and inclusive Non-Profit Organisation which was created to ensure adolescents can get specialised support. Their website has lots of helpful information about endometriosis, specifically geared towards young people.

Their Facebook group, Teens With Endo, was started when the founders began researching adolescent endometriosis and quickly realised there wasn’t much support available for young people. They have always found the support groups to be a lifeline and wanted their daughters to have something similar that was especially for their age group! The group is a safe space for teenagers and their parents to find support and understanding in a confidential, judgement free zone. 

Someone I Love Has Endo is a group for the family and friends of anyone who lives with suspected or confirmed endometriosis. This Facebook group was created because it became a popular question with no answer: where can my parents, partner or friends go to look at information and gain support? The importance of loved ones receiving the help they need to understand the condition is paramount; their understanding of the pain it causes can make their loved ones feel much less alone, and the knowledge needed to take care of the person they love is vital to their own mental health too.

The charity has many projects working to reduce stigma around menstrual health and improve the resources available to endometriosis sufferers, with a current focus on amplifying the voices of, and providing specialist support for, minorities who have received unfair treatment. Through the work of Non-Profit organisations such as these, we can pave the way for real change to occur. 


You can sign their petition to help improve the care endometriosis patients receive here: https://www.change.org/p/nhs-no-endo-left-behind?utm_content=cl_sharecopy_30951018_en-GB%3A8&recruiter=1228729626&utm_source=share_petition&utm_medium=copylink&utm_campaign=tap_basic_share

Find out more about what they do here: https://www.endosupportunited.org & https://www.endosupportunited.co.uk

Header image by Yuris Alhumaydy on Unsplash

By Beth McCowen