What is endometriosis and what are the symptoms?

As actor Amy Schumer opens up about the condition, Anna Druet, research scientist for period and ovulation tracking app Clue, explains what it is

Amy Schumer has revealed she underwent surgery to remove her uterus and appendix, which she said had been “attacked” by endometriosis.

The 40-year-old actor said in a video on Saturday: “The doctor found 30 spots of endometriosis that he removed. He removed my appendix because the endometriosis had attacked it. There was a lot, a lot, of blood in my uterus.”

She added: “I’m really hopeful and I’m glad that I did it. I think it’s going to change my life. So that’s my update.

“I’m going to try to share this story at some point to raise awareness because so many people don’t even know the word endometriosis and it’s like one in 10 women [that] has it.”

Endometriosis is a common disorder that affects around 176 million women of reproductive age worldwide.

However, there is still little understanding of what the condition actually is.

An inquiry by the All-Party Political Group (APPG) found that it takes an average of eight years for a woman in the UK to receive a diagnosis for endometriosis.

The survey also found that 58 per cent of people visited the GP more than 10 times before diagnosis while 53 per cent went to A&E with symptoms before diagnosis.

The report surveyed over 10,000 people with endometriosis about their experiences and interviewed healthcare practitioners.

Here is everything you need to know about endometriosis:

So what exactly is endometriosis?

Put simply, it is when tissue similar to that which grows inside of the uterus (the endometrium) grows outside of the uterus.

In most cases, this growth happens on and around organs in the pelvic cavity, and the tissue in endometriosis acts just like it would inside the uterus: it grows, thickens and tries to shed with every menstrual cycle.

In endometriosis, the tissue has no way of leaving the body and it can cause a lot of pain and lead to other complications, including infertility.

We’ve come a long way in terms of breaking down cultural taboos surrounding periods, but talking openly about a disorder that directly involves fertility and reproductive health is something that still invites controversy and presents a challenge.

This lack of discussion and shame are major reasons why this condition often goes undiagnosed, which can be extremely debilitating for the sufferer.

Endometriosis can begin around the same time as the first period which may lead a person to think a high level of pain is “normal” for them, when it could actually be caused by endometriosis or by another medical condition.

Another reason a person might not recognise the symptoms of endometriosis as anything other than those commonly prevalent around menstruation, is that they are often cyclical, meaning they occur at the same time as the period.

What are the symptoms and when do they usually start?

Symptoms of endometriosis generally develop before the age of 30 and can include any of the following: heavy periods, painful menstrual cramps, pain during or after sex, painful bowel movements and urination, pain in the abdomen or lower back that can last throughout the cycle, and difficulty getting pregnant.

Should you experience any of these, it is always important to speak to a doctor.

What causes it?

It is still unclear exactly why endometriosis occurs; but oestrogen production, genes, and the immune system are all thought to play a role in the development of this condition.

There is evidence that endometriosis can be passed down through the genes, meaning a person may be more likely to have it if someone in their biological family does.

Additionally, someone may also be more likely to develop endometriosis if they reproduce later in life, or not at all.

Many people with endometriosis are informally diagnosed and treated based on their symptoms, but in more severe cases, an official diagnosis of endometriosis can be confirmed with a simple laparoscopic surgery.

Does it cause any complications?

Infertility is a common complication of endometriosis, and can cause distress to many, but it can often be avoided if the condition is treated early.

In order for sufferers to gain a better quality of life and take control of their pain, we need to ensure that people can better recognise their symptoms, so they have a better chance of getting earlier diagnosis. For this reason, we need to raise awareness of this rarely talked about disorder and make conversations about endometriosis the norm.

Anna Druet is a research scientist at period and ovulation tracking app Clue.