What Is Endometriosis?

I don’t, nor Lara, have endometriosis (often called endo), and until recent years, Lara had only knowingly met one woman who does. That said, I see women talking about endometriosis regularly in Facebook groups, and I’ve often found myself wondering, what exactly is endometriosis?

From the experiences women share, it sounds absolutely awful. So let’s talk about it.

According to the World Health Organisation (WHO):

“Endometriosis is a disease where tissue similar to the lining of the uterus grows outside the uterus, causing pain and/or infertility.”

Endometriosis can be incredibly difficult to diagnose and often goes undiagnosed for years. The most reliable way to diagnose it is through a laparoscopy, a form of keyhole surgery where a small camera is inserted into the stomach or a biopsy is taken (a sample of cells is removed) to better understand what is happening inside the body.

Unfortunately, there is no cure for endometriosis. Treatment usually focuses on managing symptoms such as pain, although surgery can sometimes be done to remove endometriosis lesions, adhesions, and scar tissue. The aim of the surgery is to reduce pain and, in some cases, improve fertility.

In the past five years, research surrounding endometriosis has finally begun to pick up pace. Studies have found probable causes, and work is underway on blood tests that could help diagnose, along with measuring the severity of the issue and clinical trials are testing new treatments that aim to fix the disease itself.

For decades, endometriosis and women’s reproductive health in general have been severely under-researched and underfunded. For example, most gynaecologists are still not trained well enough to spot or manage endometriosis, and patients are rarely told specialist care is needed. According to the WHO, endometriosis affects an estimated 10% of preproductive age women worldwide. This amounts to around 190 million women! There is likely more, since many cases go undiagnosed.

I remember coming across a previous study published over ten years ago that focused on things like how partners feel about endometriosis or whether the woman with the disease was perceived as more attractive. I couldn’t believe it, just another example of medical misogyny.

Meanwhile, many people with endometriosis are unable to work or live normal lives, yet the condition is still not consistently recognised as a disability. I’m really happy with the recent surge in research, but it also proves what could have been achieved all along and highlights how much suffering might have been prevented if women’s health had been taken seriously sooner. 

Lara actually shared that she went to a Let’s Talk Gynae a few years back where endo was discussed and she watched a fifteen-minute video surrounding it. It wasn’t until Lara started on her fertility journey that she even heard of it. She said in theory one in ten of her friends have it, and yet she has only ever met one woman (that she knows) with it, and that was during the time she went to watch the mini film!

This wasn’t one of the awful videos we see in school surrounding sex education. It is actually a story about two sisters who both have endo. We’d definitely recommend watching if you know next to nothing about endometriosis, as it deserves to be talked about more, or it may be nice to view if you relate. 

If you think that you might have endo, check out this pain and symptom diary from EndometriosisUK. It will help you monitor what you are feeling and that can be used for a diagnosis, to manage symptoms or to use if you need time off from work, school etc.

Please let us know in the comments if you have any other questions about endo, as it is a topic we think more women without a doubt need to be educated on 🙂