If you don’t have endometriosis, you probably don’t know much about it. As the fight to normalise discussion of periods focuses on the basics, it can lead to a gap in knowledge when it comes to period conditions.

March is Endometriosis Awareness Month, here are some key facts you should know.

Endometriosis and the endometrium are NOT the same thing

One of the biggest misconceptions surrounding this long-term condition is that the endometrium and endometriosis are the same thing. This myth has hindered those with endometriosis for years and it’s something many focus on correcting in their advocacy work.

So, let’s unpack this. The endometrium is the inner layer of the uterus. During the menstrual cycle, hormones cause it to change. It thickens over the course of the cycle to nourish an embryo should pregnancy occur. If it doesn’t, it breaks down during the period and sheds through the cervix and vagina.

Endometriosis is when the tissue breaks down just as the endometrium does. The difference here is the blood has nowhere to go. It becomes trapped in the body causing inflammation and pain. It can attach itself to other organs. This can lead to scarring, lesions, adhesions and cysts. It is a long-term condition that affects 1 in 10 people worldwide.

Endometriosis impacts the whole body

Although everyone can experience this condition differently, things to look out for include:

• Extremely heavy and painful periods that impact your ability to go about your day
• Nausea and bowel issues (constipation or diarrhoea) especially during a period
• Pain with sex, bowel movements or urination
• Pelvic pain
• Chronic fatigue
• Trouble conceiving

Endometriosis is more than just a bad period, it affects the whole body. It can be a debilitating condition to live with. Many who suffer with it speak about how it takes a toll on nearly every aspect of their life. Symptoms can worsen over time too.

It has been found in almost every major organ

• Pelvic – lesser/minor pelvis, ovaries, fallopian tubes, the recto-uterine pouch and the uterosacral ligaments posterior of the uterus
• Extra-pelvic – endometriosis found outside of reproductive organs, has appeared in digestive, urinary and respiratory systems.
• Thoracic – diaphragm/chest cavity and lungs
• Sciatic – the sciatic nerve, which branches from the lower back through to the hips, butt and down each leg

It usually appears within the pelvic region but has been found in every major organ apart from the spleen.

Diagnosis times have not improved in the past decade

In 2020, the Endometriosis APPG report received over 10,000 responses from those with a confirmed diagnosis of endometriosis. They found an average of 8 years wait time for a diagnosis. It was previously 7.5 years meaning it has gotten worse.

The reason why diagnosis takes such a long time is probably due to a lack of understanding. There are many theories as to why endometriosis occurs and the most widely accepted is retrograde menstruation. The idea is that instead of leaving the body normally, the tissue flows back into the fallopian tubes attaching itself to other organs. Many argue that this theory doesn’t explain why endometriosis can occur in people who have had a hysterectomy. It can appear in foetuses as well.

The symptoms of endometriosis are similar to other common conditions, which means it is often misdiagnosed. The only definitive way to diagnose is by a laparoscopy. This is an operation where a camera is inserted into the pelvis via a small cut in the stomach. The surgeon will use the camera to look for any signs of endometriosis. If found, the tissue may be removed for further examination.

Any doctor who treats endometriosis can call themselves a specialist

When a doctor wants to specialise in an area, they undergo training often known as a fellowship program. Current programs exist for areas such as infertility but there is currently no standardised way to become an endometriosis specialist. Nor does additional training exist to understand this complex condition.

This means anyone who has seen a patient for endometriosis can call themselves a specialist. When in reality, many see doctors who do not have a comprehensive understanding of endometriosis. For example, excision surgery is considered the gold-standard of treatment and many ‘specialists’ cannot perform it. Many doctors and activists focus on campaigning to change this.

We need better awareness of endometriosis. More research and funding is needed in order those affected to get proper treatment in a timely manner.