You are not being ‘dramatic’ : the very real pains of endometriosis

The history of medicine has never been particularly kind to women. Whether it is the fact that women have only been mandated to be included in clinical trials since 1993, or today’s lack of research into one of the most prominent diseases, Endometriosis. This disease affects 10% of all women of reproductive age. Surely a disease affecting this many people should not take an average of 8 years and 10 months to diagnose. 

Endometriosis is a chronic condition in which the endometrium lining, which is typically shed every month within the menstrual cycle, grows outside of the womb, commonly on ovaries, fallopian tubes and pelvic tissue. These unwanted growing patches of tissue can react to hormones, cause bleeding and inflammation and potential scarring every month, not even yet mentioning the immense pain that occurs for women living with this disease. While mild cramps are common during periods, severe pelvic pain that interferes with your everyday life may indicate endometriosis, and speaking with a doctor about it may help find management strategies.

It is difficult to target and diagnose a disease which has no reliable biomarkers. It is especially difficult to diagnose a disease which is so commonly mistaken and simplified to simply being intense period pains. In some cases, this condition is identified at birth and is then something to be managed for the rest of a woman’s life. However, for so many young girls they are told they are simply being ‘dramatic’, that pains which have them curled up on a floor just waiting for them to stop, are 'normal'. Or periods so heavy that they can’t do anything without taking an entire pharmacy in a bag with them, living in constant fear of bleeding through their clothes.

A recent Science feature investigated the story of Kathrine Burns, PhD, who was diagnosed with the condition in her early 20s. She describes having pains that sent her to the emergency room, and being dismissed by many gynaecologists, the very people she hoped would help her. When it came to treatment options, she was disappointed at the lack of available options, as are so many women today. Taking birth control pills can bring on other unwanted side effects and can impact everyone differently. Surgery to remove the masses grown can help but does not count as a permanent cure, and living in and out of surgeries is not ideal. Motivated to investing the condition which has had such an impact on her life, Burns now works investigating it at the University of Cincinnati College of Medicine. 

A disease estimated to affect 176 million women worldwide (according to Endometriosis UK) should have much more well-funded research ongoing. Even this large number is only a rough estimate as many cases are undiagnosed, and access to health facilities vary across the world.

Whilst the cause of endometriosis is unknown and there is yet no definite cure, a greater focus is being put on this disease. It is estimated that 30-50% of endometriosis patients face varying degrees of difficulty conceiving. There are also many related pregnancy complications such as miscarriages and an increase in ectopic pregnancies.

Alongside the weight of these patients’ chronic pains and chances of infertility, there has been a link made investigating genetic associations of endometriosis with depression, anxiety and eating disorders from a 2023 study published in JAMA open network. 

Recently, two new daily take at home pills have been approved by the NHS. These are Linzagplix and Relugolix combination therapy which treats endometriosis by blocking pain causing hormones. This hopes to reduce painful periods and non-menstrual pelvic pain in an attempt to manage side effects. Worldwide there are ongoing studies which are investigating new treatments and research on this, with hopes of eventually giving patients some relief. Locally, the Newcastle upon Tyne Endometriosis Centre is accredited by the British society of gynaecological endoscopy (BSGE) and offers specialists in this field, providing help and treatment for women. There is also ongoing research within the university about this condition, with a growing focus on its genetic causes and molecular mechanisms. 

With this research and ongoing studies across the word, the focus on the condition affecting 1 in 10 women worldwide is growing, with hopes for extending our knowledge and improving treatment in the near future. Finally, to the women living with endometriosis and its symptoms daily, you are not alone, and you are definitely not being 'dramatic'.