Endometriosis affects 1.5 million of those assigned female at birth – have you heard of it?

Emma Cox

CEO, Endometriosis UK

Have you heard of endometriosis? Symptoms include chronic pelvic pain, painful bowel movements and painful sex. It’s suffered by 10% of women and those assigned female at birth, and the chances are you know someone with the disease. Yet, 74% of men don’t know what endometriosis is, nor do 62% of young women, despite the fact it can be active from puberty to menopause.

For too long, menstrual health conditions like endometriosis have been swept under the carpet, labeled “women’s problems” and not talked about. The chronic, sometimes debilitating pain that many with endometriosis experience cannot be ignored any longer. Those in severe pain, vomiting or passing out due to pain, should not be told it’s ‘normal’ period pain, they’ve got a low pain threshold, or they’ll grow out of it.

Diagnosis takes an average of 7.5 years in the UK.

What is endometriosis?

Endometriosis is a condition where cells similar to the ones in the lining of the womb grow elsewhere in the body, usually within the pelvic cavity. Each month these cells react to the menstrual cycle in the same way as those lining the womb, building up and then breaking down and bleeding. However, this blood has no way to escape. This leads to inflammation, pain, and the formation of scar tissue (adhesions).

Symptoms experienced vary from person to person, depending on where the endometriosis grows. If you have one or more of the following, you could have endometriosis:

• chronic, severe pelvic pain
• painful periods
• painful sex
• bowel and/or bladder problems
• fatigue
• difficulty getting pregnant.

What to do during COVID-19

Many experience period pain, but if you have pelvic pain that is interfering with your everyday life, it’s best to see a doctor. Although services have been disrupted due to the outbreak of COVID-19, GP surgeries are still open for business and you can call your surgery to find how you can access their support. In preparation for your GP appointment, keep a pain and symptoms diary so you can easily explain what you’re experiencing. Endometriosis symptoms overlap with those of other conditions and having a diary of what you’re experiencing, and when, can help doctors recognise what’s going on. 

Difficult diagnosis due to the taboo surrounding endometriosis

Diagnosis takes an average of 7.5 years in the UK. This is due to a combination of people with endometriosis thinking the level of pain they are enduring is normal, menstrual issues considered taboo or embarrassing, and symptoms not always being picked up even when help is sought. During this time, pain management is rarely offered. We all have a role in turning this around. By being prepared to talk about menstrual wellbeing we can help break the taboo and support those suffering with endometriosis.